LIFE WITH BLITZEN...

PURPLE DAY.....

2011-03-27T05:50:00.000-07:00

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...

2011-02-24T11:54:00.000-08:00

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???

2011-02-21T16:46:00.000-08:00

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....

2011-01-21T07:48:00.000-08:00

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...

2011-01-14T11:16:00.000-08:00

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...

2011-01-10T17:39:00.000-08:00

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...

2010-12-21T14:31:00.000-08:00

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...

2010-12-13T20:07:00.000-08:00

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!!!!!!!!!!!!!!!!!

2010-12-10T15:22:00.000-08:00

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...

2010-12-03T15:28:00.000-08:00

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...

2010-11-15T12:40:00.000-08:00

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!!!

2010-11-15T07:16:00.000-08:00

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....

2010-11-11T07:38:00.000-08:00

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!!!

2010-11-01T14:07:00.000-07:00

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....

2010-10-28T14:54:00.000-07:00

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...

2010-10-27T13:02:00.000-07:00

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....

2010-10-23T17:39:00.000-07:00

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

2010-10-21T08:57:00.001-07:00

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

2010-10-15T09:46:00.000-07:00

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...

2010-10-12T12:49:00.000-07:00

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....

~the aftermath~

2010-10-11T16:30:00.000-07:00

fabulous time at camp...

canoeing, zip line, crafts and so much more...

played with old friends...

made some new ones....

and became very sleep deprived=

LOTS of seizures when the worn out camper came home.... ugh

BUT.... it's still worth it. She has the time of her life and gets to be "normal"... at least for a little while....

It's that time again.....

2010-10-08T11:36:00.000-07:00

Wow... Can't believe camp time has arrived again!! Hannah is off to her epilepsy fall weekend camp this evening... She is, AS ALWAYS.... SOOOO excited!!! This child lives for this camp experience. Hannah loves to re unite with her friends that she only gets to see at camp. I love that for her.... This is the one place where all these kids can be normal. No one judges them... No one makes fun of them... No one looks at them weird. EVERYONE has one thing (and probably oodles more) in common.......... seizures.
The camp staff is amazing. They love the kids like their own.... I don't worry (okay maybe just a wee little bit) about Hannah. She is fantastic hands...

Thanks Camp Flame Catcher for all the wonderful memories your provide for Hannah!!! It's an unforgetable experience......

new neuro...

2010-10-03T07:39:00.000-07:00

This past week we went to a new neurologist. This doc was recommended by her pediatrician and was a fantastic referrral! He is part of Cincinnati Children's, but is at a different location. Hannah and I both LOVE this new neurologist. From even the first moments, he seemed to really "get" Hannah. It was a very daunting feeling for me to try to explain Hannah in a 1-2 hour session. Dr. Neuro really eased my feelings and made it very easy to talk. We talked about these new seizures. He agrees that puberty is reeking havaac. He basically said to pull up my boot straps and know that it isn't going to be an easy time, but we will get through it.
About half way through the appointment, Hannah was being... ahem... very distracting. I was having difficulty concentrating on what he was saying because I was having to "manage" Hannah. He saw and understood this. He stood up and told Hannah "come on... let's go for a walk." He took her down the hall and to the nurses station, sat her down at a comupter to play games. He came back and in the room and we continued to talk. He said "it's okay... i deal with this all the time. She will be fine out there and she is entertaining the nurses!!"
He really gave me hope that there ARE more medications to try. But, he wants to continue to give Depakote a try. But he DOUBLED her dose and changed her to an extended release tablet. Dr Neuro thinks it should work better. He said she wasn't on near enough Depakote. He also increased her Diastat to 20 mg from 12.5 mg. And, Dr. Neuro wants to add Ativan into her resue meds. He said it works a little better and is much easier to give (squirts in the mouth in between cheek and teeth). We will go back in 2 months to see if the changes in meds are making a difference in her seizures.

At some point, I started to cry. I was feeling so overwhelmed that we finally have a doctor who understands Hannah. He can see the "whole Hannah" and not just looking at one part of her and sending us on our way....

And then he dropped the bomb shell..........

He asked if she has even been tested fro Dravet Syndrome. I told him I had talked with genetics a year or two ago about testing for it. They poo pooed me saying she wasn't "severe" enough. Dr. Neuro said that absolutely is not true. There is a range of severity just like in Down Syndrome. He said there are kids on his caseload that look just like Hannah. They are considered Higher Functioning Dravet kids.... He said they are really smart over there (genetics), but they don't know seizures.... He really feels she has Dravet. Dr. Neuro thinks given her history, how she looks, how her seizures have changed, how she acts... that we may have FINALLY found a diagnosis. Holy cow. I really don't know how to feel. Part of me is relieved and the other part of me is freaking out! I am scared and giddy all at the same time. At one moments, I feel like, yes, this really fits her. And then other moments, I feel like, nope, no way...

From the Dravet Syndrome Foundation: http://www.dravetfoundation.org/

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of epilepsy for which there is currently no cure. Seizures begin in the first year of life in an otherwise typically developing infant. Initial seizures are most often prolonged events and, in the second year of life, other seizure types emerge. All seizure types are remarkably resistant to medical therapy and the prognosis for Dravet syndrome is poor.

Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly managed. These conditions may include:

•behavior and developmental delays

•movement and balance issues

•growth and nutrition issues

•sleeping difficulties

•chronic upper respiratory infections

•sensory integration disorders

•disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.

Unless a cure or better treatments for Dravet syndrome is found, individuals with this disorder face a diminished quality of life. Current treatment options are extremely limited. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.

So, we did lots of bloodwork and urine testing. And now we wait.... we should have the results in 6 weeks. I know it won't change the treatment... to have a name.... but we will HAVE A NAME!!! All the doctor's for 9 years have all felt there is a syndrome, but have not been able to come up with one.... We will see...

more cheerleading pics.... cause she sooo cute!!!

2010-09-19T06:09:00.000-07:00

Hannah's 5th grade team is REALLY good. I think they will probably go to the "superbowl" at the end of the season. They are 4-0!!! And they weren't close wins either... Usually 20 -30 point spread!

I was able to get Blitzen's jersey decorated... and it is soo cute. So this was the first game where he was sporting his new and improved jersey....

Hannah had a rough game. She continues to have those darn absence seizures... somedays... a lot. She had one just as we were walking out the door to go to the game. Wet everywhere. Had to go change; thankfully, we have double of everything, except the shirt.... She was pretty out of it for the whole game. I felt bad. Most people don't understand why she was acting that way.

is that not adorable???

FIRST in her class!!

2010-09-05T09:56:00.000-07:00

Hannah's rabbit, Sadie, won first in her class!!! Wow. Was she ever excited! They went back in for overall champion of breed. She ALMOST won reserve champion. It was so close. The judge went back and forth, with what seemed like forever... In the end, he went with the other rabbit. I was so proud of her, once again...

she looks so cute looking at the judge, hoping he picks her!!

Fair time...

2010-09-03T13:08:00.000-07:00

4-H.... Hannah's first year. She took a cooking project and her bunny... The cooking project was "quick snacks" and she was judged in July. She made a berry smoothie for the judge. Honestly, we were just hoping for an "A." There is SOOO much more to these books than when I was in 4-H. Much to our surprise, she not only got an "A," but she got an honerable mention ribbon!!!! WOW! I am so proud of her.
So, Sadie, the bunny, went to fair on Tuesday... another new experience for us all... Hannah had her showmanship judging on Wednesday night. She was very nervous. She had a huge class and not all of them were first timers.... In the end, she didn't place, but I could not have asked for more.... I was one proud mama!!! Her rabbit handled so nicely.

The regular rabbit show is tomorrow. Hopefully Sadie will show well. Hannah really wants a ribbon!!!

First Football Game....

2010-08-26T12:50:00.000-07:00

Saturday, Hannah cheered her first football game. All gussied up, stretched, and full of excitement, she got on that sideline and cheered her little heart out. I was just bursting inside... My girl, even through all these stupid seizures, was finally in a "normal" extra curricular activity.... and having the time of her life....

I was brought to tears when they were standing by the goal posts waiting for the boys to run on the field and her name was announced. She looked so little, yet so big...

An even more tender moment occurred when Blitzen was introduced to the pee wee football board president. This man... gets it. It was HIS idea to order Blitzen his own jersey so he could be part of the team... an honorary "mascot" if you will.... Once Blitzen was dressed in his "uniform" we took him to meet this wonderful man. He had tears in his eyes. He said he was so happy and it made him feel so good that "EVERYONE" could participate in this sport. What a sensitive soul.... I wish there more people in the world.

We had just gotten his jersey, but we are going to get his name put on it and maybe a megaphone!!!

Hannah's coach, Merrilyn, lending a hand with those pesky pom poms.....

Cheering her heart out......

5th Grader.....

2010-08-26T09:55:00.000-07:00

Yesterday was the first day of school... WOW.... where did summer go??? Hannah was ready to go back. Even though she is still having multiple seizures a day and wetting herself with most of them, she was so excited to start the year. We had a big meeting with ALL her teachers and WOW, I mean all of them.... 2 regular ed teachers, 3 intervention teachers, band teacher, PE teacher, art teacher, psychologist, counselor, Hannah's aide, and the principal... WHEW!!! We discussed Hannah's schedule (which changed 3 times in the week before school started) and all the changes with Hannah over the summer. I felt SOOO much better after this meeting and think it's going to be a great year. I think we have everything in place for when she wets at school (she only had one seizure her first day)... It's sad to think that with every year she is older, she needs more help from her aide. God love Miss Vanessa!! She is awesome. She has been with Hannah since 1st grade. It really gave me comfort; Hannah going back to school with everyone so new, knowing Vanessa was there....

OH.... I almost forgot.... she got a new "do" the night before.... It is SOOO cute and she is thrilled with it. She wanted bangs and layers. I love it!!!!

Onto the pics.....

All ready to go!!!!!

Blitzen is anxiously waiting for the bus!

I LOVE, LOVE, LOVE this pic!!!!! so sweet.....

Yes indeedy.... that would be a silly band on Blitzen's paw!!! I don't think it lasted too long.... :)

no big changes...

2010-08-16T15:18:00.000-07:00

Hannah is still having tons of seizures... It is frustrating. We have a neurology appt next Monday with the neuro from Indianapolis. I am really anxious to see what changes she will make. Hannah isn't real fond of her, so I hope the appointment goes okay...

Meanwhile... Hannah's pediatrician really wants us to see a particular neurologist at Cincinnati Children's. She made a phone call and explained Hannah's complex situation and he agreed to take her on... The earliest they could get her in was Sept 30th. (I was actually surprised it was that soon). I am REALLY hoping this neurologist is a good fit. I have a positive feeling about it. Her pediatrician really knows Hannah well. And, we have a great relationship; I trust her on this...

I still want to keep the appointment in Indiana though. We just can't go until the end of September without any changes in her medication. Especially, with school starting next week....

That's all for now!! I will post how her appointment goes next week....

first week of cheerleading....

2010-08-05T09:52:00.000-07:00

This is a pic of most of the girls... Hannah is towards the back in the 5th grade row. There are only six 5th grade cheerleaders (the smallest squad)....

It is sooo hot and miserable this week. The coach keeps reminding the girls that they could have football pads on while they practice!!!!!

I think this is the "Blue Devil groove......" (yes, we are the Brookville, Blue Devils....)

She is working so hard at practice. I am very proud of her. Many of the girls have done this before, so they know most of the cheers. This is Hannah's first year, so this is ALL new. They teach the cheers very fast; it's really hard to remember them!!! So far, she has had at least one seizure both days of practice. She gets right back out there and forges on.... The coach is awesome with her though. She is a nurse and is so understanding. She knows she is trying her best. AND coach LOVES Blitzen!!!!!! He will have his very own jersey to sport at the games!!!!! I can' t wait to see it!! I am sure he will be thrilled. I keep telling him, be glad he isn't a girl.... he would be sporting a skirt and bows to match!!!!!! First game is less than 3 weeks away... .YIKES!!!! She (I mean, WE) better get practicing!!!!

here we go....

2010-08-03T13:36:00.000-07:00

CHEERLEADING......

starts...........

TONIGHT!!!!!!!!!!!!

She is soooo excited! This is her first year and I think we have NO idea what we are in for.... ;)

But, I LOVE seeing her happy.

especially lately....

absence seizures.... again

2010-07-30T10:30:00.000-07:00

Hannah went to Epilepsy camp last week, and as usual, had a blast. She loves seeing all her friends there and made a couple new ones. There were two new campers and Hannah took them right under her wing! SO cute!!

When she got home we noticed that she was wetting her pants. I got into her bag to wash her clothes and noticed that her clothes were wet as well... I knew she was having seizures... I started to pay very close attention to her. Then we saw it.... She is having absence seizures again. These are the type she had when she was first diagnosed with epilepsy. She hasn't had absence seizures since Kindergarten. And even then she would wet her pants. But, it didn't seem like it was as often.

So, at the start of the week, I took her into the pediatrician because I know the first thing docs will want to rule out is a UTI. Her doctor tested her, but absolutely no infection. She agrees they are absence seizures. I have noticed several seizures... she stares towards the ground and completely misses whatever conversation was occurring... then she wets her pants. She is wetting 2-5 times every day, but I have seen some seizures without her wetting, so who knows how many she is having....
I was talking with my sister in law (who watches the kids while we work) and our neighbor....Both of them said they have seen her zoning out and then all the sudden coming back to the conversation. I am thinking if they are noticing them, they are probably happening often.

The good news is that Blitzen picked right up in them. I can tell that he knows they are different. He will sniff her and then paces back and forth between Hannah and me. Sometimes he even whines...
I have been really racking my brain as to why these are coming back. It hit me like a ton of bricks this morning...... puberty. I know, I am a little slow. I have been warned and even telling the school teachers, anything is possible when she hits puberty. ugh. How many more years of this????

Since we are currently "in between" neurologists, I am trying to get her into see a doctor. I have no idea when that will be. In the mean time, I am trying to help her not be completely embarrassed when she soaks her pants; not an easy task at all....

is there a connection???

2010-07-14T19:22:00.000-07:00

We had our follow up with Dr Sleep/Dr. Neuro... This appointment was with her Dr. Sleep "hat" on. She went over the reports from her stay in the hospital a couple weeks ago.

She said "has anyone shown you these reports?"

Me: Ummm. No.

Doc: But the home healthcare company came out and changed the settings on her BI PAP machine, right?"

Me: Ummm. No.

Doc: No one has told you anything then?

Me: Ummm.... (you got it...) No.

She looked rather puzzled and said well, let's go over them then. "yes, let's do!"

Her sleep study proved to be the most telling. (I found this interesting because she just had a sleep study last October and didn't need any changes to her BI PAP machine). She is still having apnea and really high CO2 levels. The respiratory therapist had to increase her settings so it was set appropriate for her needs. For the hours that she was sleeping, she had 114 arousals; 17 per hour... GOOD GRIEF!!! Apparently what is happening is that she isn't getting enough oxygen (to much CO2) and her body wakes her up just enough to take a deep breath and get some more oxygen. 114 times worth!!! So she never gets in a really good sleep... therefore, very tired the next day.

The MSLT (daytime study) was negative for narcolepsy. Out of the 5 naps, the person with narcolepsy has to get into the REM sleep cycle at least 2 of them. And, the average time they fall asleep must be less than 8 minutes. Hannah did fall asleep 4 out of 5 naps, but never got into REM. Her average time of falling asleep was 14 minutes.

Dr. Sleep is really hoping that increasing her settings on her BI PAP machine at home will improve her quality of sleep enough that she won't be so tired. She wants to give it a couple of weeks and see if we notice changes. If we don't, we will probably be looking at adding a medicine to her regiment. Ugh. She stressed the importance of Hannah wearing her mask every night. Actually her words... She really HAS to wear it every night. This did not go over well with Hannah. She doesn't like it. Never has... Sometimes it's a battle I choose not to fight. Make that...CHOSE not to fight. She has no choice in the matter now. She WILL wear it every night (maybe with just a little bribery... just a little). We go to home healthcare this Friday to get the settings changed as well as try on new masks. Apparently there are new and wonderful ones since we got her style three years ago. It would be nice if someone would just make a PINK one... Is that too much to ask??? Make it just a little...girlie??? It would make my life sooo much easier.

For whatever reason, the EEG report was nowhere to be found. She said she had read it, but now it was lost somewhere in the system. She will call me and/or send it to me when they get ahold of it. Kinda weird, but okay...

Meanwhile though, she thinks, (here comes why I think it's great to have a sleep doc and neurologist all in one....) there is a possibility that her high CO2 levels and seizures could be connected. She said there are some studies that are linking the two.... hmmm. This could be very exciting!!! High CO2....sleep deprivation.... increase in seiuzres..... I think it has validity...How bout you???

testing....

2010-07-03T09:22:00.000-07:00

We stayed in Cincinnati Children's last week a couple days for Hannah's testing. She had an EEG, a regular sleep study and an MSLT (daytime study) the next day. All in all, it was a very good stay. I think we got tons of information that will hopefully give the doctors a direction in which to go...

First off... For the first time since we have had Bltizen, he alerted at the hospital...........
wait for it...... wait for it........

WHILE SHE WAS HOOKED UP TO EEG LEADS!!!! I know, shocker, right??? We were actually on the sleep lab floor and not the VEEG floor, so the nurses weren't nearly as excited. She had a complex partial (first one we caught on EEG). And this was on all meds too!!! I am excited for Dr Neuro to check it out on EEG!!

So then about 9 pm. they hooked up all her sleep leads. She has had many sleep studies before, so it really doesn't phase her anymore. She fell asleep fairly quickly and had an uneventful night (with the excpetion of having to get up to go potty what seemed like a gazillion times!! The Respiratory Therapist started to get really annoyed that she had to keep unhooking her.... But, whatya gonna do???) Although, I did notice that her carbon dioxide levels were on the high side (this is why she wears her BI PAP while she sleeps.... but she had her BI PAP on during testing and it was still high.... maybe need some changes there??)
The RT came in and woke us up at 7 am. She was able to get to unhooked from the wall, move around a little and have breakfast. So hears how the MSLT works....

Wake up at 7 am.... At 8:30 the room is made completely dark and she is given 20 minutes to fall asleep. Once she falls asleep she is only allowed to sleep 15 minutes. They come in and wake her up. We did this all day long. Every 2 hours she was "encouraged" to go to sleep. 8:30, 10:30, 12:30, 2:30 and 4:30.... In between each nap, she was unhooked and allowed to leave her room to go to the playroom, cafeteria, and gift shop!!! She was so stoked. She is never allowed to leave her room!!!

Hannah was able to fall asleep 4 out of 5 naps!! I really couldn't believe it. I think she would have fallen asleep for the last one, but she was too excited to go home... What they are looking for is for her to get into REM sleep 2 out of 5 naps. If she does, she will be diagnosed with narcolepsy. (so even though she slept, the question is whether she went into REM sleep.... I don't know....)
I really didn't think we were going to get this diagnosis (and still haven't... have the follow up on the 13th), but I was hoping to shed some light on why she falls asleep so easy and so often. While school was still in session, she was falling asleep in school and still falls asleep in the middle of the day, even on summer break.

So, I am really looking forward to the follow up to see what Dr Sleep and Neuro has to say.... Meantime, Hannah is doing pretty well. It is summer.... Seizures always slow down in the summer. Why???
NO SCHOOL!!! School is her biggest stressor. We see this trend every year.... She is only having a complex partial about 2-3 times a week!!! I will take it!!!!!

Random funnies....

2010-06-14T10:14:00.000-07:00

We were driving this morning to drop the kiddos off to their prospective childcare facilities (ugh, don't ask).... the subject of the boys' birthdays came up (not all too uncommon these days...both coming up in July)...

Josiah.... how long will it be until my birthday?

Me.... Just about 5 weeks away...

Josiah... So, just over a month?

Me...yep

long pause...........

Josiah...Well do we have to go to the babysitter that day?

Me.... Depends on if it's a work day for mom...

Josiah... (in SHOCK) you mean they don't give you the day off when it's your kid's birthday????

Me... I wish, but no....

Josiah... Well, I think they should!!!!

Ahhh....... the innocence... : )

A few weeks ago Josiah had a fairly decent BMX crash. As evening rolled around, his knee started to get really swollen, so I thought I better get it looked at (sometimes hard to tell real from drama with that middle kiddo!!)
So, we are sitting in the exam room waiting on them to come from x ray.... trying to entertain the best I can with what I have...

After long pause with no conversation...... Eli (my ever so funny 4 year old) says..........

SO........ YOU WANNA TALK ABOUT ARMPITS???

I immediately burst into laughter. He says WHAT????.....

(lifting his arm pointing to his armpits)

YOU KNOW.... ARMPITS.... YOU WANNA TALK ABOUT EM???

Man, I love that kid!!!!!

My mom just reminded me of another funny story.....

The kids just spent the week with my parents (God bless their hearts!). They had taken the kids to Dairy Queen for ice cream one evening. They were sitting next to an older couple at the next picnic table...
Hannah's ice cream fell off her cone and onto the table.... Moments later, Josiah's ice cream fell on the table. Good grief!!!
Just as straight faced as he could be Eli turned to the older couple and said....

WE EAT LIKE PIGS HERE!!

They all burst into laughter. Once again....Eli wondering what was so funny? : )

A BRAND NEW LOOK!!!!!

2010-06-13T13:12:00.000-07:00

Well??? Watcha think of the new look? I have been wanting to "update" the look for quite some time. I am pretty happy, but will probably continue to tweek!!!

Hannah is back from nana and papa's house. The kids spent 8 days with their grandparents. COMPLETELY SPOILED, I might add... : ) It has been a teeny tiny bit rough getting back on schedule. You know, convincing the kids they DO STILL have chores....they DO STILL have to read and do flash cards...the animals STILL need to be fed and cared for, even though it's summer break!!! What they really get mad about is this all has to be done BEFORE they go out and play.... I know, I know...

MEAN MOMMY!!!!

I am confident they will get back into the routine of things.... : )

Hopefully sooner rather than later!!!

officially a 5th grader!

2010-06-07T18:44:00.000-07:00

Wow...Where does the time go??? Seriously. It really does feel like a blink of an eye. It is so scary to think she is over half way to an adult. {insert shiver....} Where did my FOUR pound baby go???

IEP for next year is done. For the first time since Kindergarten, we are trying inclusion next year. I am so, so happy for Hannah. She will love it. I am also so, so scared. After much discussion, I decided to give it a whirl. I would rather her be given the opportunity to excel and pushed a little more and maybe not make the highest grades (very hard coming from an over achiever), than have her work watered down and get all A's. She will still have her one on one aide. Modifications will still be in place. She will just remain in the regular ed room; of course Blitzen will be with her. Some days her intervention teacher will be in the room with her. Everyone is on board and will be watching her very close. The teachers will re-evaluate after three weeks into her 5th grade year. If she is struggling, changes will be made. I am happy....but nervous.

She is staying with her grandparents this week. I am sure getting spoiled rotten and having a ball. My mom is really the only person I trust for her to stay with. My mom has been there from the very beginning. Hannah is very special to her. She goes with us to all of our week long hospital stays. I don't know what I would do without her.

Hannah has been fairly stable. She is still having complex partials about every other day. Some days, all day long...some days, we have none. She hasn't had a tonic-clonic in 5 weeks now! That is almost a record!!! Her sleeping patterns are still very different. We go for her sleep study, EEG, and day time study the 23-24th of this month. I hope it shows something as to why she is falling asleep during the day. Even though school is out, she will still fall asleep late morning. She is even sleeping in a bit more now. As always....hoping to get answers.....

Mother's Day....

2010-05-10T14:03:00.000-07:00

I had such a fantastic Mother's Day!! I woke up to breakfast in bed. The kids made me cards, beautiful flowers from my sweetie and a gift certificate for a massage!!! WOW!!! I can't wait.....
After we came home from church and had lunch we head to Morrow, Ohio. We were able to pick up Hannah's 4-H bunny yesterday. Roadtrip!! What beautiful baby bunnies. The breeder let Hannah come a day early to pick out her bunny before everyone else came the next day....so sweet. She picked out the smallest baby. A cute little all black fluff ball!! She (we think it's a she) is 4 weeks old and all pure delight!! (Pics to come later)
On the way home we stopped at Cox Arboretum. How beautiful. I honestly wasn't sure how well this would go because Hannah was really having a difficult time. Behavior wise.... BUT....we gave it a whirl.

This is how Hannah's mood was in the beginning.....

to this....

"How's this mom?"

coming around.....

Ta Dah!!!! Feeling better....

But, by the end, Hannah was doing better. We did get some great pics of the kids... It is an amazing place...

Complete with a butterfly house....

Is that a great shot, or what????

They were looking at all the fish....

Even had this awesome maze made of shrubs.... Kids loved it!!

Boys checking out a turtle....

After our stroll through the park, we talked daddy into going out to eat....Afterall, we had to feed the kids!!! So, we headed to our favorite Mexican restaurant.... Mmmmmm.... It was such a nice way to end Mother's Day. They were even handing out $10 gift certfitcates and a rose to all mom's!!! I have the best fam ever!!!!!

Loves the Lord...

2010-04-29T15:19:00.000-07:00

I am so proud to write that Hannah gave her heart to Jesus and was baptized this past Sunday! She has wanted to get baptized for quite sometime, actually. We wanted to wait until daddy was home from Iraq so he could witness this wonderful occasion! She was baptized along with her two cousins, Audra and Emma. AND was baptized by her uncle who is also her pastor. I know he was very proud too....

Praying for Hannah

Praise the Lord!!!

Before the girls were baptized, they also sang Untitled Hymn. They did an awesome job! These are huge strides for Hannah for wanting to do all this in public. She had one proud mama and daddy!!!

We have had a week of doctor's appointments...We finally met with Dr Neuro/Sleep doc... It was a fantastic appointment! My first impression was a great one. We are going to do some sleep tests to see why she is sooo tired in school and why she is having such crazy sleep patterns. In June we will go for an EEG, sleep study and an MSLT study (daytime study).
We also saw her cardiologist this week. Her blood pressures were up some, but she doesn't want to change her meds at this point...We are going for an echocardiogram to check on her heart....

Blitzen's been doing great! He has been alerting at school and at home. We continue to feel absolutely blessed to have him as part of our family...What a good boy, he is!!!!!

Recorder Concert...

2010-04-02T16:54:00.000-07:00

For the past two years Hannah has been playing the recorder in music class. Let me tell ya, the girl practices ALL THE TIME!!! (This includes while in the van.... mmm hmmm... I know you get my drift!!!)

Anyhow, this past week she had her recorder concert. All 220 of her classmates all gathered on the bleachers and played their little hearts out.... They were really good!!! (i know, surprising, huh???)
They were accompanied with music and all. They even finished off the evening playing the fightsong!! The crowd got into it like it was a basketball game...

I was very impressed.... by how well they all did...

Here we come....

2010-03-24T19:56:00.000-07:00

An exciting thing happened today....

I decided I needed to get Hannah another appointment with the sleep clinic. Her sleeping patterns have really deteriorated in the last several months. I was holding out to talk with the new Dr. Neuro about it. Hoping maybe she would have some sort of explanation, meds or otherwise, and tell me how to fix it! Of course, we all know, it didn't happen that way... At our follow up appointment last week, I brought it up to her and honestly, she really passed it off. She wanted me to discuss that with the sleep docs. (obviously she didn't think it was medication related, at least not her seizure meds....) So, I called the clinic today. We chatted and I caught her up on the latest happenings....

Hannah has a sleep disorder called alveolar hypoventilation syndrome. It basically means she has too much carbon dioxide in her body when she sleeps. Her brain is constantly waking her up and causing her to never get in a good sleep cycle. To help this, she wears a BI PAP when she sleeps. It does help to give her a better quality sleep. However, in the last several months, she has difficulty getting to sleep, wakes up in the middle of the night, has trouble getting up in the morning, falls asleep in school and often and combination of all the above....

So today, she said she really wants to refer her to new doctor.... There is now a neurologist at Cincinnati Children's Hospital who just finished her fellowship as a sleep doc!!!! NO WAY!!

Drum roll please.....

Her speciality is kids with epilepsy who have sleep disorders!!!!!!!!!

Oh where, oh where, have you been???? This may very well be a two for one deal... I am so excited that she may bring new insight in how these diagnoses are connected. Hannah is right up this doc's alley!

The sleep clinic was able to "slip us through the back door" and got us an appointment in April... YAY!

You betcha..... HERE WE COME!!!

PURPLE DAY.....

2010-03-22T16:48:00.000-07:00

This Friday...

March 26th...

Is Purple Day!!

Will you join us and WEAR PURPLE....

In honor of Hannah...and all the precious children with seizures?!

Go to http://purpleday.org/ to learn more about Purple Day
and the incredible little girl who came up with this amazing idea.....

playing the seizure game....

2010-03-18T11:13:00.000-07:00

We had Hannah's VEEG follow up yesterday... didn't quite go as I had invisioned..... I don't really know what I expected....except hoping the new Dr. Neuro was a miracle worker, I guess. EEG was definitely abnormal. spikes in temporal region on both sides and also in the central parietal region (I think that is a new area...don't remember that from past EEG's). Slowings in the waveform all over the place. These all occurred in wake and sleep hours. SO, Dr. Neuro wants to keep with the Depakote but increase it (Depakote seems to be a good med for her in terms of low side affects). Two increases within the next two weeks. She wants to check her levels in 3 weeks. I will call her in 2 months to let her know how things are going.... She said, we would "go from there." Not sure what that is....

I can appreciate this step in "the plan." I think she wants to see what getting Hannah on a really hefty dose will do for her seizures. However, with Hannah being on her 12th seizure medication, I know what will happen... we go through a honeymoon period. seizures continue. we continue to raise until the side affects are either too severe or we can't go any higher....Then, onto a new med....start all over. You know, the seizure game. I am so sick of it. But, there is nothing else to do. I guess I was hoping she would turn nothing into something....

She isn't giving up on Hannah. That is the most important thing. So, we keep on...keeping on....

Home, Sweet Home....

2010-02-26T13:35:00.000-08:00

Hannah working on a wind chime for Nana....

We are home from our VEEG stay at IU Hospital. It was a new experience as this was the first, NON Children's Hospital we have ever stayed in. Most of the staff were great. I think they enjoyed having a kid to work with. The biggest thing was that they didn't have a Child Life Department, which I knew ahead of time. So we brought our own!!!! We had every craft under the sun. It was "THE ACTIVITY ROOM!!!" We were able to keep her very busy.

Blitzen was quite the hit as well. Everyone loved him. The word spread quickly that he was "in the house!!!" Employees and patients were coming to see him. We made lots of friends this past week! Top kuddos go to our favorite nurse, Melissa. She was our nurse the first day and set the bar very high!!! (she came to visit us the rest of the week even though she wasn't our assigned nurse). She would do ANYTHING and EVERYTHING for Hannah....What a fantastic asset to Indiana University Hospital. TOP NOTCH!!!

Hannah is the bravest, best trooper I know. She got four IV sticks (two didn't work) and didn't even flinch. The nurses commented that she did better than most adults there. Hannah didn't complain at all the entire week. She even wore her BI PAP mask. Most of you don't know how monumental this is. She didn't used to wear this in front of anyone...not even her dad. She was very self conscious of how she looked in it. Hannah declared this week that she LIKES it!!!! WOW. When she is ready for bed, she now asks for it, I help her put it on, and she is "light out." I am one very proud mama.

We had to wrap her head so her BI PAP wouldn't mess up the wires....

Hannah and our favorite nurse, Melissa

We got some really good information while spending the week there. Most telling to me, Hannah's EEG pretty much looks the same on meds as it does offf of meds.... I think a change is definitely coming our way. We did get to see Dr. Salanova while we were there, but she wanted to wait until she could see all the information and the report until she gives her recommendations. We have a follow up appointment in March, but not until the 17th. I am very anxious to see what we are going to do. Hannah had only one small seizure while we were there. She had tons of spikes and slowings of her waveform, which is seizure activity. Dr. Salanova did not want to take her off her medications. She wanted to see how she looks and functions on the current dose. Apparently not too well.....

While we were there, I also got a call from genetics. Hannah does not have Ring 20 Epilepsy Syndrome. I really thought this was going to be her diagnosis. Her 20th chromosome was normal, not showing any ring. So, the search continues.....

Giving lots of lovins to Blitzen. He loves laying with her on the bed...

Awwww. gotta love it......

We always hang a sign on the door, so no one is surprised to see a dog in the room. (especially unsuspecting staff in the middle of the night!!!)

Just Chillin......Life of a Working Dog!

New Neurologist...

2010-02-17T16:12:00.000-08:00

Hannah and I embarked on a new adventure today.... We had our long awaited for appointment with a new neurologist (4 months to be exact). I hadn't called her doctor her "new neuro" until today. Wasn't sure. I have been very unhappy with her neurologist in Cincinnati for.... ummm. probably 6 months now.

We went to Indianapolis, IN to University of Indiana Hospital, to see Dr. Salanova (she is also affiliated with Riley Children's Hospital). In my mind, we were getting a second opinion. I prayed all the way there. Prayed for hope... a new direction... to get out of a rut.... fresh eyes on my girl.... We weren't in the office for 10 minutes and I knew, in my heart, this was her new neurologist.

She took a detailed history (best she could, after all, Hannah 's history could take all day to go over!). She listened. She took diligent notes. She looked at reports I brought with me and reports she already had in her file. She heard my concerns and agreed changes need to be made.

She wants to admit Hannah to the Epilepsy Monitoring Unit... I knew this was coming; though not excited to hear the words. But understand why. Dr. Salanova wants to see what Hannah's EEG tracing looks like before she gives her recommendations. I shared my frustrations with our previous VEEG experiences. How, when we get there, NOTHING happens.... She simply said...."It's okay. It's okay if she doesn't have any break through seizures. Yes, I would like to see them, but I need to see what her spikes and all her abnormal activity looks like. I want to see if it comes from both sides of the brain, several parts of the brain, day or night, or both.... We can tell so much from the spikes her brain gives off......" Of course, I am thining, WHY IS SHE THE FIRST DOCTOR WHO HAS SAID THIS????? So...... no pressure. We will start off keeping her on her meds. She wants to see what she looks like with meds in her system. (great concept, huh?) If we don't get what we need, they will take her off meds. She said she wanted to schedule her for three days, more if we need longer....

She thinks Rufinimide may be an option as one of the very few meds left to try (her eyes widened when she saw the list of meds she has been on). She also thought she may be a great candidate for a VNS. I told her how we were on that track for surgery when insurance got in the way and then the neuro put it on hold.... She said "don't worry, we will work it out with the insurance and get her the help she needs." That compassion, those words brought tears to my eyes.

Ready for the kicker??? Dr. Salanova got her scheduled in the EMU for Monday!!!! As in, this coming Monday!!!! I couldn't believe it. She wanted her admitted to the University Hospital instead of Riley because she said the wait is much shorter... I'll say!!!!

So.... here we go again.... This time I have so much more hope in my heart.

a long shot.... but still hopeful....

2010-02-03T16:38:00.000-08:00

So, a few months ago, I came across an epilepsy diagnosis that literally gave me goose bumps. As I read through all the information I could find, I couldn't believe how much it sounded like Hannah. I called Hannah's genetics doctor and he agreed that it was definitley worth testing. drum roll please....... R (20) Epilepsy Syndrome (or ring 20)..... There is a foundation set up to share awareness about this diagnosis...

http://www.ring20.org/r20syndrome/index.aspx

Ring chromosome 20 epilepsy syndrome, also known as r(20) syndrome, is a rare chromosomal anomaly resulting from a break on each arm of chromosome 20 resulting in ring formation. In r(20) syndrome, the breakpoint of most patients is in the p13q13.33 region of chromosome 20. This syndrome is characterized by medically intractable epilepsy, nocturnal subtle seizures, behavioral problems and mild mental impairment. Unlike other chromosomal aberrations, dysmorphism (major or minor congenital malformation) is rarely reported.

Epilepsy is a constant feature of this syndrome and in many cases is intractable and drug resistant. Seizures are often complex partial in type and reported as episodes of altered consciousness with staring, oral automatisms, unspecified automatic behavior, focal motor symptomsand/or head turning. Subtle nocturnal behavioral changes such as stretching, rubbing and turning have been observed which resemble normal arousal behavior. In addition, subtle nocturnal seizures (SNS) and subtle nocturnal frontal lobe seizures (SNFLS) are also reported Seizures are often difficult to control with antiepileptic medications.

Today was our genetics appointment. I have been very reserved because I don't want to get my hopes up of after almost 10 years, to finally have an answer. I went to the appointment loaded with my information all about it. We work with a wonderful resident who was very attentive and felt like it was a very good thing to test for.

Diagnosis of ring chromosome 20 syndrome can be made by recognition of certain characteristic clinical features; however, definitive diagnosis requires chromosomal testing of the affected person's cells. This is most easily done by looking at the chromosome pattern (karyotype) in blood cells but any other tissue including skin could be examined. Since chromosomal analysis or karyotype testing is not a routine investigation when epilepsy first presents, the diagnosis of r(20) syndrome may be delayed or go unrecognized. In other words, some people with difficult to control epilepsy may have a ring chromosome 20 but be unaware of it. Almost all parents of individuals with r(20) syndrome have no evidence of r(20) syndrome in their own blood chromosome analysis. A few individuals, typically relatives of affected patients , have been found to have a ring chromosome 20 without any evidence of symptoms. Why these people are protected against development of epilepsy remains unknown. Neuroimaging studies and metabolic studies are unrevealing in this disorder

So, we have already done the chromosome array test. It showed normal chromosomes. But the following is what really caught my attention.....

Since chromosomal analysis or karyotype testing is not a routine investigation when epilepsy first presents, the diagnosis of r(20) syndrome may be delayed or go unrecognized.

Please note:
1) We have seen the ring 20 in as few as 5% of cells, and we recommend requesting a screen for chromosomal mosaicism.
2) Newer array technology will NOT detect the ring chromosome and we recommend standard metaphase chromosome analysis.
We ask that you please consider chromosomal analysis if you have a patient (age 0-17) with the following symptoms:
predominantly complex partial seizures

medically refractory epilepsy with no etiology identified

Lennox-Gastaut-like features with no etiology identified

frequent subtle nocturnal seizures (SNS) and/or subtle nocturnal frontal lobe seizures (SNFL)

EEG showing prolonged high voltage frontally dominant slowing intermixed with spikes or sharp waves

EEG showing overlapping features of continuous slow spike and wave discharges in sleep (CSWS) and electrical status epilepticus in sleep (ESES)

normal childhood development until onset of epilepsy

lack of dysmorphism or other congenital malformations

cognitive impairment/learning difficulties/mild retardation

WOW!!! There is still hope. This abnormal ring can be found in less than 5% of the cells. So, after much discussion today, we did a skin biopsy on Hannah. They said the skin cells would be the best modality to test. Before the test, the attending came in. He agreed to do the test but, started to poo poo it. I think he wanted me to know it was really a long shot. He said he thought it was less than 1% chance of showing this mosaic ring. He said they very rarely test for mosaic chromosomes (exactly why R (20) in underdiagnosed!!) Okay, so he deflated me, but I am still hopeful. After all, Hannah has NEVER done anything by the book.

Hannah did FANTASTIC with the biopsy. I could not have be more proud of her. They put numbing cream on her arm, waited 20 minutes (thank God for the new DS game she got for her birthday), and then they retrieved a chunk of her skin. She didn't even flinch! (must have really been numb). I think I flinched for her..... She is so brave.

So, now we wait..... 2-3 weeks. I am still hopeful.....

Giggling girls....

2010-01-24T13:36:00.000-08:00

Hannah celebrated her 10th brithday in true girlie-girl fashion! She had a roller skating party with 10 friends and family. It was complete with the limbo, hokie pokie, pizza, and of course, cake and ice cream! She really had a fun time. It is so nice to see her laughing and having the time of her life.

Taking a break from skating and having lunch....

Singing Happy Birthday to Hannah....

Once we left the skating rink, 6 girls headed back to our house to spend the night! Whew!! They were all really good girls and we only had a couple "tiffs", so I think we faired well. The girls played games, watched movies, ate more cake, and did LOTS OF GIGGLING!!!! I am not sure how late it was until they actually went to sleep. I fell asleep before they did!

opening presents....(a karioke machine from mom and dad!!)

Look at all those smiles!!!!

Having a blast... and believe it or not, no one got hurt!!!!

how cute are they?????

10 YEARS OLD!!!!!

2010-01-21T04:12:00.000-08:00

HAPPY BIRTHDAY TO MY SWEET GIRL!!!!

I can't believe I have a ten year old child!! The old saying is so true..... Time flies. It seems like she should still be a toddler. Most days I really long to have those days back again. (and some days, ......... I don't!) I am so proud of her and all she has accomplished already in her life. She is a nurturer and always the peace maker amongst her friends. She has to work harder than the average 10 year old, especially in school. Yet, she LOVES school. She is eager to go in the morning and gets her books out as soon as she gets home....I am so, so proud and love her so much.

She is having a roller skating party, with all the fixins, this year. About 11 children are joining in the fun at Skate World. 6 of those girls are coming back to the house for a slumber party!!!!!! And I am bracing myself..... This will be the first sleep over of this magnitude. Pray for me...lol

Next weekend, we are having a family party at my parents house. Always a fun time with all the cousins! I will have lots of pics to share later.....

I am also keeping the Chapman familyin my thoughts and prayers today. They are saying their final good-byes to their sweet girl, Hannah. I can't imagine the pain they are exeriencing. They trust in God and His infinite wisdom and know that Hannah is happy and whole.

In the arms of Jesus....

2010-01-17T17:20:00.000-08:00

The 4 Paws family lost one of their own today. 8 yr old Hannah passed away at 5:15 pm today. Please keep her parents, brothers and loyal service dog Koolio in your prayers. Our hearts go out to the Chapman family tonight.

prayers for a friend...

2010-01-14T08:05:00.000-08:00

A friend of ours, Hannah, is very critically ill. Yesterday she started having a seizure that turned status. She was care flighted and is still intubated today. During her 2 1/2 hour seizure, she aspirated and now has pneumonia. As of about an hour ago, Hannah is still unresponsive. They are hoping this is due to all the medications they gave her to stop the seizure. Please pray for her and her family. They need a miracle. Here is a a link to her blog. She got her service dog, Koolio, in March of last year....

http://www.hannahstory.blogspot.com/

This deployment is OVER!!!

2009-12-31T18:06:00.000-08:00

Well, we safely brought daddy home last week. What a week it was....Josiah woke up Monday morning screaming with ear pain. I took him in, medication on board...We woke up Tuesday, absolutely buzzing with excitement. We left home at 10 am allowing us enough time to get there. Gary's Welcome Home Ceremony was at St. John's Arena on the Ohio State campus. Talk about pomp and circumstance!!! The guys flew into Columbus and then they loaded them into charter buses, with full police escort to the arena. All of the families, friends, employers, and LOTS of media were waiting there with intense anticipation....
While we waited, a tv channel in Columbus, started interviewing us, mostly Josiah. The cameras stayed on us (I have no idea why, other than I have really cute kids!!!) They reunion was AMAZING! We were able to go right up to the buses as the troops unloaded. Hugs and kisses all around.... Then the tv cameras interviewed Gary.
We were on tv that night in Columbus!!! Here is a link to the news video.....

http://www.abc6onyourside.com/shared/newsroom/top_stories/videos/wsyx_vid_1898.shtml

After that, we headed inside and started the ceremony. Let me tell you, it is quite a sight to see 400 soldiers marching in with everyone going nuts!!! It still gives me chills. After hearing lots of dignitaries speak, the troops were FREE!!! It felt so good to have him in our arms knowing he was coming home with us.
On the way home, we stopped at a Bob Evans to eat dinner. (wild kids and all!) While we were at our table, the waitress came over and said someone saw our van and wanted to thank us (I had a window decal put on the back window of the van that said "Look out! We're on our way to pick up OUR DADDY! Our HERO is back from Iraq!!) This person had purchased a $50 Bob Evans gift card for us!!!! A perfect stranger; not even sticking around for us to thank them.... There are still nice people in the world.......

This past week has been time to catch up...The kids are home from school on break and eating all of daddy's attention up!!! Christmas was wonderful. It was just us. We stayed in our jammies all day! I can't remember a better Christmas, ever.....

Hannah has been fairly stable. We have been having less Blitzen alerts (actually going a couple days with NO alerts!) The seizures that she has had, haven't been too bad. For that, I am grateful... We are looking forward to 2010. Wishing you all a great new year!!!

CHRISTMAS GIFT!!

2009-12-18T07:29:00.000-08:00

DADDY IS GOING TO BE HOME FOR CHRISTMAS!!!! We are all jumping for joy!!

Gary is back in the United States...debriefing. He will be flying home on December 22nd. They will be having a coming home ceremony at St. John's Arena on the OSU campus. And then we will be heading home. Wow. What a fantastic Christmas gift!!!

Daddy asked the kids what special activity they wanted to do when he got home....(he is spending a special day with each child).
Hannah: "I want to go roller skating at Skateworld!!"
Josiah: "I want to go do paintballs!!"
Eli: "Um, instead of paintballs, can we buy squirt guns and spray each other????" (I think Josiah told him it can hurt). so cute....

Full Circle....

2009-12-14T17:10:00.000-08:00

Feel like I am walking down memory lane this evening....Hannah officially started Depakote tonight. This was her very first seizure medication when she was 4 years old. Wow. Almost 6 years ago. I still remember EXACTLY where I was when I was told she was having seizures. The day our lives changed. Her wonderful pediatrician called me from her home on her day off....I was driving. I pulled over in a church parking lot and listened in disbelief. We finally had an answer as to what was wrong, but I felt so blindsided. The wind knocked out of me.....I had no idea, at the time, what a rollercoaster we were about to go on....good thing too. I could not have handled it.

So, because we have only two medications left to try and both have a very little chance of helping, we are trying Depakote again. Six years ago, this drug had very little side affects (if any), but never controlled her seizures. Her seizures were very different then. So, we will see if it controls her better now. We have come full circle..... We are going to wean onto Depakote and in two weeks, start weaning off of Diazepam. Hopefully, with the holidays and daddy's return from Iraq, we will have a smooth transition of meds. Faith and Hope.....

Happy Birthday Blitzen!!!!

2009-12-10T06:04:00.000-08:00

Blitzen is three years old today! I can't even put into words how much of a blessing he is to our family. I love him sooo much!!! We really have trouble remembering what life was like before Blitzen came into our lives.

Hannah took cupcakes as birthday treats for her class. He is a "classmate" afterall!!! The entire school has embraced him and LOVE having him there. That is itself is a blessing. (Hannah even had cupcakes to share with the secretaries, principal, nurse, even the lunch ladies!!!!)

HAPPY BIRTHDAY BUDDY!!! WE LOVE YOU!!!!

Our boy is back!!!

2009-12-08T16:04:00.000-08:00

Blitzen is feeling better today. I kept him home with me so he could rest. He definitely needed it. Hannah was sad to go to school without him. This was the first time he missed school!! He slept most of the day after he ate his modified diet this morning. I finally saw the sparkle come back to his eyes when his girl came home from school! He was sooo happy to see her. He has kept his food down and is going to the bathroom normally again. YAY!!
I am so glad his little bug wasn't any worse and didn't last any longer. I was so worried!! I even woke up with a cold sore this morning (only get those when I am totally stressed and worried about something). We needed to have him back to normal because his third birthday is on Thursday!!!

Blitzen is sick....

2009-12-07T16:56:00.000-08:00

I got called from school today (several times actually) that Blitzen was sick. At first, I wasn't too worried. He had thrown up a couple times. But, I started to worry when they said he had thrown up 4 times and had exploding diarrhea. Right before I got to the school to pick them up, they called again and said that he had rectal bleeding....OMG!! I started to hit the panic button and drove just a little faster... I picked them up and drove straight to the vet. I honestly felt like I was rushing one of my children to the ER!!!

The vet was not worried about the bleeding. (thank goodness). He said when dogs have really bad diarrhea, it is common for them to bleed. I think their bowels get that inflammed. So, he started running down the list. He tested him for parasites and for "overgrowing bacteria" in his bowel. Both were negative. Whew.... So he thinks it is viral. He gave him two shots. One for the vomiting (had a sedative in it, so he is very sleepy now) and one for his stools (actually helps the inflammation in his bowel). He put him on a very regimented eating schedule through tomorrow. If he isn't better by Wednesday or gets worse we are to bring him back in. Our wonderful vet even told me to call him at home if he would get worse tonight.

He seems better tonight. He hasn't gotten sick anymore. He just wants to sleep. No school for him tomorrow!! I think I may call him into school tomorrow morning! hehe. All kidding aside....the teachers (and secretaries) were all so worried about him. They really love him. And so do we.....

Blitzen resting this evning.... sooo sweet.

nothig new to report yet....

2009-12-03T07:03:00.000-08:00

Not a whole lot of new to report.... We are still waiting to get our appointment scheduled at Riley Children's. Why does the referral process seem to take forever???? I am sure we won't get in until March; unless our pediatrician can pull some strings!!

I am still thinking we need to go to a bigger institution. I have really been looking into options. Right now, Mayo Clinic is the top of my list. They have some really great info on their website and one particular diagnosis that really caught my eye. It really sounded a lot like Hannah; Frontal Lobe Seizures (Epilepsy). Many times, it stated, the seizures are mistaken for psychiatric or sleep disorders. They can get very violent, sometimes yelling obsenitites.... My question is, why has NO ONE ever metioned this??? Maybe I am way off base, but nonetheless, something to look into...

We are started Depakote next week. I cannot wait to see what difference it makes. The diazepam is definitely helping reduce seizures and alerts, but is making her tired. We had to lower the dose so she wasn't so "zombie like" at school. The reduction seemed to help. And, Blitzen only alerted twice at school this week!!!

Please, chime in if you have any good ideas of where I could take Hannah. Somewhere, where they possibly have seen someone like Hannah before.....

2009-11-25T06:18:00.000-08:00

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....

2009-11-22T19:03:00.000-08:00

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....

2009-11-13T11:19:00.000-08:00

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

2009-11-10T08:45:00.000-08:00

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

Game Plan....

2009-11-06T17:49:00.000-08:00

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....

2009-11-05T19:21:00.000-08:00

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....

2009-11-01T19:05:00.000-08:00

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...

Rough go again...

2009-10-29T17:22:00.000-07:00

Just a quick update....

Hannah has had many complex partials this week. Today was especially bad. The school called three times before noon. Blitzen just kept alerting her aide (8:30, 10:00, and 11:30). Hannah even had a substitute aide yesterday and today. I was very impressed that Blitzen knew to go to her; such a smart boy!!!! The teachers said that she had a lot of drooling, but no speech changes with these. But, obviously she was clustering, so the nurse went ahead and gave her versed. I never got another phone call, so it stopped the clustering. Whew!!

She has been kind of on and off this evening. So we will see what tonight holds......

pumpkin faces!

2009-10-24T16:59:00.000-07:00

Thought I would post a couple pics of the kids pumpkins they carved yesterday....

They were so proud with the outcome. The lights I found change colors, which just thrill the kids!!

Hannah's on the left, Josiah's on the right and Eli's on the table....

Hannah's lit up...

Josiah's lit up....

Eli's lit up....

Exceptionally bad one...

2009-10-24T11:28:00.000-07:00

Doesn't it just figure that one day is fabulous, the next is awful? Hannah had a great day yesterday. Her teachers said school was great for her. She was so productive and really "on." We had a great evening at home. Carved the pumpkins that have been sitting on our porch since before daddy went back to Iraq. It has been killing them that they couldn't carve them sooner. The time had come. finally.... They had so much fun. There is something therapeutic about pulling out all the gooey innards!!. We put the little battery operated lights in and all was well in the world!!!

Then there is today....

She woke up "off." I could tell it was going to be a whopper of a day. Very hyper at the first of the day and then the Blitzen alerts began. He was alerting very vigorously, I might add. She was having her usual physical symptoms as well as lots of behavioral stuff. ugh....

It gets really rough. I am really tired. Hannah is peacefully sleeping in her bed. Hopefully when she wakes up this time..... no seizures....

Back to School

2009-10-23T09:14:00.000-07:00

FINALLY!!! All three kids went back to school!! HOORAY! I am so thankful that my kids are healthy again and that we avoided the hospital all together.... The kids were ready to go back too. They can only lay and watch so much tv. Hopefully I won't get any phone calls. So far, so good....

Flu, flu go away.....

2009-10-21T15:27:00.000-07:00

This swine flu is a doozy.....It WILL NOT leave my house!!!!

The school called to pick up Josiah yesterday (I told him to try a half day). He didn't make it that long. He had gone to the nurse because he felt sick to his stomach and was just wiped out. Literally 30 seconds later, Hannah's school called and said she was having seizure activity all morning and it finally broke through. Blitzen had alerted twice. It was really affecting her academic skills. She couldn't remember how to subtract 7-4. This is something she usually breezes through. It was like that all morning apparently. When I got to the school, she was crying and just kept saying, "I'm so tired, I'm so tired...." She just wanted to go home and sleep. And she did. Her body is working so hard to fight the flu. I am praying she doesn't get it. Viruses are so hard on her body in the form of tonic clonic seizures. So far, we are good in that department.... BUT.....

Hannah did stay home from school today. She woke up feeling like she hadn't even gone to bed. AND she had a sore throat. She still does not have a fever, but I am not pushing it. So, all three kids were home from school today. (party, anyone???.....not hardly)..... The boys re -developed fevers last night and Josiah's continues today. I decided to call the pediatrician (just to make me feel better). I am so worried about them developing pneumonia. I know....I will know when they are getting sicker, I just don't like this fever that keeps popping up. So, along with the rest of the county, I waited..........and waited...........35 minutes on hold to talk with the nurse. I told her everything I could about the newest symptoms (after all THEY are the ones who told me to call with any changes). The nurse, who I am sure hates her job at this point in the season, told me...."yes, the swine flu can last up to 2 weeks and the fever will come and go." "As long as the fever doesn't get too high or you see dramatic changes in them, just let it run its course...." She didn't tell me anything new, but somehow I still felt better. I said "Okay, " felt a little foolish and started pushing fluids for the day.....

One week at a time....

2009-10-19T14:00:00.000-07:00

Thought I would give a quick update on the flu saga....
Now, Hannah's youngest brother, Eli, has the swine flu. Although he isn't down and out like Josiah was. None the less....swine flu. I think he isn't taking as big of hit becasue we all are on Tami flu now. I do think it has helped.

Hannah did worry me some this weekend though. She kept saying she was freezing and took a nap Saturday and Sunday. Totally voluntary. She does not take naps anymore, AT ALL!! Heaven forbid. I can't help but think she is fighting this virus off. Blitzen alerted Saturday and Sunday (twice) too. The comples partials were rough ones.... No seizures at night though. Usually when she is getting a viral infection is when she has her worst tonic clonic seizures. Needless to say, I have been sleeping with one eye open.

I will be so happy when this is all over.... It appears they are getting it one at a time, one week at a time.....

Piggy Flu...

2009-10-15T12:19:00.000-07:00

Swine flu has entered our home.... UGH!!! Our middle son, Josiah, tested positive for it. Tuesday night he had the worst case of croup he has ever had (and believe me, he has had more than his fair share). He could not breathe or talk for awhile. I was able to keep him from going to the ER though. Anyway, we went to the Dr. yesterday. They did the rapid flu test. It came back negative. But, because of Josiah having asthma and Hannah and her seizure disorder, she sent it to Children's Hospital. They have a more accurate test because the rapid test misses one out of four.

The office called today. We are that one. Of course. The pediatrician had started him on Tami Flu yesterday just in case. Thank goodness. Hannah is starting on it today. Their doctor said she isn't prescribing Tami Flu to everyone who tests positive, but only to families who are at risk. She thinks it helps to contain it, some. And also, make the symptoms not so severe.

In the meantime....Clorox is my friend!!!

more searching....

2009-10-14T19:17:00.000-07:00

Finally got a phone call back from neurology. The docs FINALLY read her EEG. Unfortunately, the data was not all that helpful. She still has an abnormal EEG; full of spikes and slowing of her waveform. The seizure that we thought we caught, turned out to not be all that impressive. Lots of activity, but could not pin point a focus.
So, I am feeling very discouraged. He wants to send her to a couple new specialists. The VNS is being put on hold for now. He doesn't want to do something so invasive, just yet. We will do a little more digging. A little more searching. And hopefully get some more answers.....So, onward we go.

Dorothy and Tin Man...

2009-10-10T16:33:00.000-07:00

Okay, we had a fun day today.... We went to a local pet store that has been so helpful with Blitzen. They have helped out with fundraisers and food for him. We try to support them when we can. (Not that it was all that painful today!!!)

So they has a costume contest. Hannah and Blitzen were Dorothy and Tin Man. They are ADORABLE!!! Bless Blitzen's heart. He is such a trooper. He gives me the "I can't believe you are making me do this" look, but doesn't fight it a bit. He is SO good.

The best part??? We WON!!! A $20 gift card. Woo Hoo!!! Blitzen got some good treats too. Hopefully that made up for having him dress up today.

Dorothy and Tin Man, complete with ruby slippers...

The whole gang. Dorothy, Tin Man, Race Car Driver, and a Knight.

Comforting each other....

Taking a break.

Okay...Okay...last picture!!!! You are just too cute!

nothing new to report...unfortunately

2009-10-08T19:56:00.000-07:00

Seizures continue. Just when we think we have a pattern figured out, or possibly a reason for an increase in seizures....it changes. She only had one seizure last week. ONE!!! And yes, it was the one we caught on EEG on Tuesday. Praise the Lord. But, for whatever reason, they have picked back up this week. The school called me Monday with a Blitzen alert. Seizure wasn't too bad. Nothing Tuesday. School called Wednesday with another Blitzen alert. This time he was going nuts (which usually means the seizure will be harder). He did not let us down. It was a doozie. The evening proved to be okay, but she had definite sleep issues last night. She couldn't fall asleep until 10:30 and then woke up at 2 am. She did not fall back asleep until 5 am!!!! whew!!!! Definite sleep deprivation there.
You guessed it. The school called again. Blitzen alerted again. Seizure was middle of the road, as far as her seizures go.

I called Dr. Neuro yesterday and today. No return calls. I am assuming the EEG report is not done yet or I would have gotten a call. I am also assuming there is nothing new with the VNS saga. Dr. Neuro is supposed to be calling TRI CARE to have a peer to peer conference to plead Hannah's case. I don't know if that has been done or not. We are absolutely stuck with no one wanting to pay for her surgery.

Meanwhile, my daughter continues to beg, plead and sometime scream that she wants this surgery to help her seizures go away. It breaks my heart. It really does. I want to put her on the phone with the stupid insurance company and plead her own case.
To sum it up....I am frustrated. so frustrated.....

Fall Weekend Camp

2009-10-04T14:27:00.000-07:00

Hannah spent the weekend at Camp Dream Catcher. The camp has a fall and spring weekend retreat so the kids are able to see each other during the year. I love to see her face light up when she is reunited with all her friends there. I am so amazed at all the activities they jam pack into one weekend!! She definitely brings more home than what she went with.... It doesn't hurt that she is the craft queen! She made several bottles of sand art (actually salt art....they colored salt by rubbing sidewalk chalk on it and then poured them into the bottles), beaded necklaces, earrings, made candles, and even a beautiful stepping stone with colored glass. They went horseback riding, canoeing, zip line, hiking, campfire, played gaga (her favorite) and even came home with red streaks in her hair!!! hmmm, hopefully that is washable red streaks!!!!

Her counselor did say that she got sad and started crying on the first night because she missed Blitzen!!! Let me tell you, he missed her too!!! I think he gets depressed when he is away from her. He lays in her bed just looking out the window.... awww. We keep him home while she is at camp because of all the activities they do. I don't want them to be responsible for him while she is having fun. And, I think it is good for them to be apart once in awhile. I take advantage of doing some training with him while she is away.

Hannah's great friend Jacque. She has a seizure dog named Parker....

Saying good bye to great friends.... (Notice the red streaks in Hannah's hair???)

Reunited with Blitzen. They were both sooo happy....

So pretty.....and so happy....

still waiting...

2009-10-01T13:34:00.000-07:00

Okay, so we are confident we finally caught a complex partial on EEG. I couldn't be more happy to have accomplished this. We have stayed in the Epilepsy Monitoring Unit three separate times for ten days each....with no seizures!!!! Let me tell you, that is FRUSTRATING!!!

She hasn't had another seizure since the one at school on Tuesday. (That makes me even more grateful that we caught it). I talked with the neurology nurse and we aren't making any medication changes until Dr. Neuro gets the report from the EEG. He (and I) is really anxious to see what it looks like and where it is coming from. The report probably won't be done until sometime next week. I am hoping it gives us some great infomation and a direction of where to go from here......

SWEET SUCCESS...(unofficially anyway)

2009-09-29T15:52:00.000-07:00

WE CAUGHT ONE....WE CAUGHT ONE!!!!! Not a fish, but a seizure. Can I hear an AMEN??? I thought sure she wasn't going to have any seizures. We got hooked up to the ambulatory EEG at 8 am yesterday. I got her back to school as quickly as I could (an hour and a half drive) as school seems to be her main stressor. Absolutely nothing happened yesterday. She had at least one seizure every day last week at school. The teachers couldn't believe it. She came home in a great mood (which normally I would wholeheartedly embrace), no seizures. All I could think is, maybe she is done for a little while. Naturally, as soon as she is hooked up....seems to be the story of our lives.

She went to sleep fairly well, talked A LOT in her sleep, but no seizures... UGH!! She got off to school this morning, even rode the bus with the whole EEG get up (Hannah is very self conscious. She doesn't like to look "different." We had bought new clothes with hoods, a new very snazzy hat and even a cool bag to put the monitor in). I waited all morning for the school to call. Praying. Please don't let this be in vain. We need information. Finally...THE call!! Blitzen had alerted at 11 am in math class. Good boy!! Another call at 11:30. Blitzen alerted again in the lunch room (never alerted there before). Another atta boy!! There were no visible changes in Hannah yet. Then at 11:45 the seizure began. Glazed over, drooling, baby talk, and getting very agitated. I came at 12:30 to pick her up so we could head back down to Cincinnati to unhook the leads. She was still pretty out of it. Miss, "I don't want anyone to see me like this", completely had her electrode ridden head exposed. She didn't care. I am not even sure she knew it. wow. She went all the way to Cincinnati and all through the hospital like that..

Before they unhooked her, they checked the data, It was there. In all its glory. Praise the Lord. Once they knew it recorded properly, they unhooked her, very itchy head.

So, now we wait....probably a week or so. If this shows them coming from one area, doors could be re- opened. But, I am trying not to get too hopeful....

And no word on VNS yet.... the saga continues....

mixed bag....

2009-09-28T12:41:00.000-07:00

Yesterday was a bittersweet day. Daddy left to go back to Iraq, but Hannah was seizure free!! The first day in a nine days. No alerts, no rescue meds, no crazy behavior!! That was really sooo nice. Of course, this on the eve of an ambulatory EEG. So, I am thinking, is this the end of the valley we have been in or are we just taking a one day break???

We got up bright and early today (okay, not so bright out, quite still dark actually). I got the boys to the sitter and Hannah and I were on the road by 6:15. An amazing feat in itself....Hannah did FANTASTIC getting hooked up. It is really kind of sad. She has done it so many times that the smell and the whole drama of it, doesn't even bother her anymore. I think she was just happy , and even said, "at least I don't have to stay 10 days or have an IV"!!! What a trooper. We had one of our favorite techs help hook her up. She takes good care of my girl. So, hoodie and hat in place (went shopping at Justice for new apparel) we were off.

We got to school and she a little apprehensive, but went in like the champ she is. I was sooooo proud. I gave the teachers a couple instructions about the diary and button to push and I was off. Hoping for the call today....the call I got every day last week.... No alert. No seizure....No strange behavior....

WHY....WHY...WHY... when we get hooked up to record these stupid things, nothing happens???? ARGH! I must admit that I have rekindled that tiny glimmer of hope that maybe they could pinpoint an area where these are coming from. Still hoping for that cure. Resection....
We don't go back to unhook until 2 pm tomorrow. There is still hope....

Meanwhile...I have been on the phone to anyone I can think of about this second denial. The case manager got the rep to talk with Dr. Neuro today. He is arranging to have a "peer to peer conference" with some director of appeals at TRI CARE. He will plead Hannah's case to them. Dr. Neuro's nurse had a very good point today....She said it probably isn't even a neurologist. For all we know, it's a gynocologist who doesn't even know what a VNS is!!!

So we will keep on keeping on....

Denied....again.

2009-09-26T17:24:00.000-07:00

Devastated.....

Because Hannah is not 12 years old, VNS appeal is upheld. They did not even read all the documentation. I am sure of it. She is not 12 = not approved. Who cares that she is a little girl with seizures that are completely out of control and this is our last hope.

And I quote: "Documentation submitted with you request for appeal, other available supporting information and the original denial information were presented to a second physician reviewer. The second physician reviewer's comments were " Converage is requested for implantation of vagus nerve stimulator for the treatment of refractory complex partial seizures in a 9 y/o BOY. Although there is substantial clinical evidence supporting the use of VNS for refractory epilepsy in children the VNS is FDA approved for adolescents and adults only.....This is NOT a covered benefit for TRI CARE beneficiaries under the age of 12. This denial is therefore upheld."
Well, gosh, I guess we will just wait until she is 12....
(the reason it is labeled for 12 year olds and older is because that is the youngest that was in the study. VNS's are implanted in 2 year olds!)

Great, huh??? They don't even have her gender right. I am sure they didn't even read through ANY or ALL of the pages and pages of Hannah's history... They don't care.
(BTW, the first physcian reviewer also said she was a 9 year old boy. hmmmm???)

As my rant continues...May I please remind you, this is the US ARMY's insurance. Yes, that would be the same ARMY that took my husband away from his family for over a year now....To fight in a war that my husband and all of the soldier's in Iraq are committed to winning (that's another story, for another blog, I guess).

SO....what do we do now???? I am not really sure. This lovely 6 page denial letter says that we can now send a request to the Appeals and Hearings Division, within 60 days of course. Because they really hurry all of their responses to major medical issues.... I am going to look into other options on Monday. I may even talk to a lawyer friend of ours.....

I called TRI CARE yesterday (before I received this letter, but was obviously already decided and sent out). "Is there anyway we can expedite this appeal?? My daughter's situation is quickly becoming an emergency. She is having seizures every day, sometimes multiple times a day. We are using rescue medications EVERY day, sometimes multiple times a day...."
lady on the phone" Oh my, let me write all that down and quickly send that to the department that is reviewing her case." yeah, whatever. Your computer probably told you while I was on the phone with you it was not approved. AHHHH!!!! I am so frustrated. Hannah had 15 seizures in the last 7 days; some of which were whoppers, lasting for hours. We have no ides why the increase.... Maybe Monday's EEG will shed some light. I sure hope so.

Meanwhile.... I have to put on my brave face, take my family to the airport in the morning, and watch my husband load a plane to go to the other side of the world. again.

the plan....

2009-09-22T17:45:00.000-07:00

After many phone calls back and forth with neurology we have decided to do an ambulatory EEG on Monday. Hopefully we can catch these seizures on EEG and see where they are coming from. We will be at the hospital in Cincinnati at 8 am. They will hook her up and then I will get her back to school. She is going to be H O T!! It is not going to be easy to get her to go to school (and who can blame her??). We have never been able to see what her EEG looks like in the "real world." I really want to see what it looks like under stress.

We will go back to the hospital sometime on Tuesday. They will unhook her and we will then figure out what the short term plan is. If the seizures stay at this frequency, Dr. Neuro will either start her on Banzel or Klonipine. Hopefully this will carry her through until surgery. Still no word about the VNS......

....more seizures

2009-09-22T09:02:00.000-07:00

I am baffled why Hannah is being slammed with seizures. Due to my personality, I like to know...WHY?? WHY all the sudden? What are we doing different??? It drives me crazy and keeps me up at night...

Sunday was actually a pretty good day. A day of rest for Hannah. She needed it. We all needed it...
she went back to school yesterday. Blitzen alerted at 2 pm. More Versed. She came home fairly decent. But then he alerted again at 7 pm. and again at 9 pm. More Versed....We were able to get her to sleep by 10:45. WHEW!! I am wore out. And, grateful my husband is home to help me get through this rough spot.

SO, I have had many conversations with Dr. Neuro's nurse. We are to the point where we HAVE to do something. Question is...what??? There are two meds left. Benzel and Vigabatrim. Benzel is not known to work well with complex partials (but, Hannah is not known for doing anything by the book, so who knows??). Vigabatrim was just reapproved in the US and is known for working well with partial complex seizures. Problem is that one of the big side affects can be peripheral vision loss. Irreversible. I am not sure I am willing to take that chance given her odds of ANY medication being effective at this point. Less than 5%.... I think right now I am leaning towards starting Benzel and hope for a 2-3 month "honeymoon" period. That time frame may get us close to haveing VNS surgery.

Which leads me to my next...ahem...biff.

I called and spoke with the case manager working closely with the insurance company. She just spoke with the insurance on Friday. Here it goes..."Her case has been received and is in process. It may take up to 90 days." WHAT??? "But usually only takes around 30 days." UUGGHHH!! We are well past 30 days. I am so annoyed. The technology is there..... We need it...... But THEY won't get out of the way. I am going to call the insurance company myself today. I am sure I won't get anywhere and it will just make me more angry, but at least I can say I tried... Mama bear is waking up!!!!!

Meanwhile.... I am waitng for another phone call from Dr. Neuro to see what we are going to do.....

We have less than one glorious week left with dad. It has been so nice to have dual parenting again....I know it will be hard on everyone to let him go back. Including him.

While he was home, this past weekend, his unit in Iraq had a horrible helicopter crash. They got caught in a sand storm and flipped over. 11 were injured and one soldier lost his life. It has really made me sick to my stomach. Gary wonders if any of them will ever be able to fly again, because of the mental anguish. This makes it all the harder to let him go....

Pure bliss....and then... BOOM!

2009-09-19T21:23:00.000-07:00

My husband, Gary, and I were able to get away this week for a few days. I liked to call it our "Getaway for Two." We went to Holmes County, Ohio; Amish country. Exhilerating....Relaxing.....Renewing.....Refreshing........mmmm. Need I say more???

I really wasn't ready to come home. We rented a cabin. It was sooo beautiful. I could have lived in it forever. It was a much needed respite for my husband and myself. We enjoyed just sitting in each others' presence with no interruptions. We have another week of daddy being home with us. Time is going so fast. It is going to be very hard to let him go back to Iraq...

But, like most things, all good things come to an end....Hannah has been slammed with seizures the last two days. Blitzen alerted at school yesterday. My wonderful mother was staying with the kids while we were away. She was able to go to school and give Hannah her resuce meds. (Naturally there was a substitute nurse who had never heard of giving versed nasal spray, let alone administer it). My mom is a retired nurse so she was able to give Hannah her meds without a problem. She was decent the rest of the day. Gary and I got home around 6 pm Friday. By 9 pm, Blitzen was alerting again. This time I gave her oral diezepam. It worked okay and she was able to go to sleep. The night went well. She woke up this morning and was definitely "off." By 8:30, Blitzen was alerting again. More Versed. Didn't work too well today. We battled seizures all day today. Another alert at 3 pm. Another alert again at 6 pm. UUUGGGHHH!!! She was completely out of control all afternoon. She was aggressive, her speech was very slurred, and she was drooling. Nothing could console her or keep her content....With the last alert, I gave her Diastat. My hope was that it would "reset her system." My bag of tricks was empty.... It took awhile, but finally at about 8:30, she seemed to be herself again. Hopefully it will be a quiet night.....

I have no idea why we have had this increase all of the sudden. She went almost a week with no seizures. I really did think she was leveling off after getting settled in school. Maybe that is still the case. She could be getting sick. She always has an increase in seizures when she is coming down with something. I will be calling Dr. Neuro on Monday. He may or may not start her on Vigabatrim. Really not sure what he will do. We are still holding out for VNS surgery. We still haven't heard anything from the insurance company. COME ON ALREADY!!!!

Daddy's home!!

2009-09-13T18:32:00.000-07:00

For two enjoyable weeks, anyway.... The military flies them stand by, so we don't know until last minute whether or not they make the flight. He had two long days of flying, but finally at 11 am his plane landed in Dayton!! I only had an hour and a half to pick up the kids at school and get everybody to the airport. I surprised him by bringing the kids. It was soooo good to see him. The kids were squealing in delight (and I was on the inside!!) It has taken him all weekend to try to adjust to jet lag and the time change (Iraq is 8 hours ahead). But, he is doing better tonight.

Cute pic of dad and the kids going for a bike ride.... Gary can't get over at how green everything is....

I am SOOOO looking forward to Wednesday. He and I are leaving for our "GETAWAY FOR TWO!!!" My mom is coming to stay with the kids (yay for grandma's!!) so they can still go to school. It will nice just to have quietness....together....

Danielle....this is for you....
A pic of our house...

On the mend...

2009-09-09T19:05:00.000-07:00

Hannah is feeling so much better today. Once I started giving her enough motrin to touch the muscle pain, she really started doing better. She still had difficulty sleeping last night. We haven't figured that one out yet!! She was able to go to school today and had a great day! Yay!!

This was Hannah yesterday after diagnosed with torticollis. That is all the farther she could straighten it.

The topic of the day has been H1N1 flu, vaccine, Tamiflu, seizures... What a source of discussion!! I had a long conversation with her pediatrician today. She REALLY wants Hannah to have the vaccine. To her, there is no discussion about it. To be honest, I was not going to get her the vaccine. Biggest argument for it? 2/3 of the kids who have died with the H1N1 flu had neuro muscular diseases. That is so scary. Her doctor said Hannah will be one of the first people that the office calls to get the vaccine. She feels Hannah is that high risk.

Tamiflu....the next item for discussion. Apparently people are already building up resistance to it because it is being overused. Doctor's were giving it to people who didn't even have the virus, but they were afraid they would get it. For kids who have seizures, it is even more of a debate. Tamiflu can increase or intensify seizures. UGH! What is a mom to do???

I guess I need to put Hannah in a bubble and lock her in the house for the winter!!!

Tonight was Eli's pre school open house. I had to share this cute pic. Hannah was little mother hen...

torticollis...

2009-09-08T18:45:00.000-07:00

Hannah has been having trouble sleeping ever since we started her newest medication, Clonidine. The last several weeks she will wake up in the middle of the night, wide awake. She will be up for at least an hour. The irony? Most kids who take Clonidine take it to HELP THEM SLEEP!!! I really don't understand why it has the opposite affect on Hannah. Anybody have any insight on this??

Last night took the cake though.... I think she went to bed around 9 pm. I am not exaggerating at all, she did not go to sleep until 2 am!!!! She wasn't even drowsy. WIDE AWAKE!!! Which we all know meant, I was also AWAKE!!!

The worst part was when she woke up this morning. Her neck was causing terrible pain. She apparently slept on it wrong. For most of the day she held her head on her shoulder. Poor thing. I felt sooo bad for her. We did tylenol and motrin and heat all day. It was not getting any better. I decided if we were going to get any sleep tonight, we better see a doctor.

Off to the pediatrician. Thank God they could get us in. (on Dr. Pediatrician's dinner hour!! Thank you, thank you!! She diagnosed her with torticollis. The big muscle in her neck is in spasms. She said it will take 3-5 days to really feel better. ugh. She didn't give her a muscle relaxer, instead beefed up her motrin dose. (much more than I was giving her!)

SO, she is already asleep. YAY!!! She wasn't feeling much relief before she fell asleep. Hopefully that won't be the case in the morning....

Proving to be true...

2009-09-03T18:04:00.000-07:00

We have had a busy seizure week. ugh... School is definitely a big stressor for Hannah. Dr. Neuro is right on with this one!! We are waiting to see if things level out for her. None of us are eager to start a new med. COME ON VNS...WE NEED YOU!!! (still not approved, BTW, but still very hopeful).

She had some big seizures on Tuesday. Had a great day at school, but came home and let loose! whew. Blitzen alerted twice between 5 and 8 pm. I feel so blessed to have him!! I tried the oral diazepam again that evening. Dr. Neuro had increased the dose so I thought I would give it a whirl....not again. It just does not work for her. not sure if it's because it's oral or because we still don't have the right dose.

The school called me at the end of the day and said that Blitzen alerted. Because it was the end of the school day, I went in to get her. I definitely don't want her on the bus with a seizure! Hannah's aide said they were in art class. Blitzen was next to Hannah, got up and "pawed" the aide. He went back to Hannah and back to the aide and pawed her again. Good boy!!! So, off to the clinic they went... We gave the increased dose of Versed. Hannah gets so mad. She gets mad she has to leave class. Mad that Blitzen alerts. Mad that she has seizures. She is getting old enough to understand how all this works. And, she does not like it!!! I hate that for her....

This evening Blitzen amazed me....yet again.... About 7 pm, I was sitting in my family room. Hannah was upstairs in her room. All of the sudden Blitzen started going nuts and alerted me. hmmm. She isn't even in the room. I looked around and saw that her back pack was right beside me. I picked it up and he was all over it!! Stuck his nose in it, around it, alerted me again.... WOW! he was still smelling her seizure from earlier in the day. (she had her back pack on at school). He is one AMAZING dog!!!

All is quiet this evening. Hopefully it will remain quiet all night...

Proud mama!

2009-08-29T18:36:00.000-07:00

Allow me to indulge....

I am so proud of Josiah tonight. He has been BMX racing for a few months now. He loves it! Tonight he won first race! FIRST PLACE!!! He worked so hard and got the BIG trophy tonight. Hannah goes to all the races and is his biggest cheerleader!! (she says she wants to race too. Uh.... no!! Seizures and BMX racing don't mix).

Way to go Josiah!!!

We LOVE Dr. Neuro!

2009-08-28T16:25:00.000-07:00

We spent a very long day at the hospital seeing Hannah's different doctors. I guess, in summary, not a whole lot of newness...

Dr. Neuro was not pleased with the increase in her seizures lately. His little trial seemed to confirm his suspicions that school is her biggest stressor. He wants to give her another 2-3 weeks and see how often we are using rescue meds. He said he will live with twice a week, doesn't like it, but will live with it. If we are using it 3 or more times, we have no choice but to start the last med. By the way, Dr. Neuro said today that Vigabatrim has been approved in the U.S. now! Kids are being very carefully monitored by opthamology due to the side affect of loss of peripheral vision... Anyhoo, he isn't too excited to start it. He wants to keep that in our back pocket in case the VNS does not work. SO, he said he will push the insurance company to approve it quickly. Surprisingly, he still thinks we can have the surgery by the end of year. I had almost given up on that idea. He also increased amounts of two of her rescue meds. Hopefully that will help end the seizures faster. I really have a lot of confidence and faith in Dr. Neuro. He really has Hannah's best interests at heart. She loves him because he knows a thing or two about Hannah Montana and I Carly!!!

Dr. Neuro also gave me the update on the genetics testing. (It is so nice everything is on the computer system, so all the doctors know what everyone else is doing) All her genetic testing came back....normal. hmmm. Quite the mixed emotions about this one. Surprised? No. No mother wants to hear that something is wrong with your child, but we already know SOMETHING is wrong, we just don't know what!!!! UUUGGHHH!!! And we are still no closer to knowing either. That is the part that is disheartening.
Dr. Cardio was very pleased with Hannah today. Her blood pressures were very good today. I think we have found the right dose with her meds now. At least for right now. That is subject to change with how fast she is growing. The girl does not stop!!! So, that was good news on that end. We did lab work to check all her levels.
All in all, not much new. We will see how the changes work with the meds and how the next couple of weeks go with seizures....

I love that dog!!!!

2009-08-24T18:24:00.000-07:00

Today was only the 3rd day of school. A new building...new teachers....that apparently did not bother Blitzen! He alerted to Hannah's aide to an oncoming seizure today. I was concerned it would take him an adjustment period, I learned today, he did not!! They were in P.E. class, in the gymnasium. Vanessa, her aide, had Blitzen and all the sudden, he kept pulling to get to Hannah. For those of you who don't know Blitzen, he is all business at school. He will lay in his place and...ahem...appears to be sleeping. (I always joke, it's the life of a working dog!!) He is very calm, doesn't lick, doesn't bark, doesn't jump, he lays in his "place." Until....he smells a seizure coming. When that happens, get out of his way. He WILL get to his girl. He will then sniff her in her lymph nodes and in her mouth. Then he will "paw" the handler. He gets soooo excited when he knows he has done a good job. He is ABSOLUTELY invaluable. The new staff were very impressed today.
The nurse called me and because it was the end of the day, I went into school. The nurse gave her the versed (much to Hannah's dismay). I took her home to rest....
I could tell when the versed wore off, she was definitely "off" for awhile, but then had a good evening.

Could I just add that I absolutely LOVE her teacher?!!!! She not only came down to the clinic when she found out Hannah was there. She stayed in there with her until we left, AND called this evening to check on her!!!!! I know, I know....very hard to believe. This could not be more polar opposite from last year's experience. What a wonderful difference. Thank you Mrs. Wylie!! We love you!!!!

I was reminded yet once again today how much I love that dog!!!!!

First day of 4th grade!!

2009-08-20T06:59:00.000-07:00

Okay... I did it. A VERY nervous mama dropped off her baby at the INTERMEDIATE school today. Holy cow, where does the time go???

She was so excited and couldn't wait to get to started.

Her teacher was so sweet this morning. She asked me if I was okay and said "I almost called you last night to be sure you were okay." What a fantastic teacher Hannah has. She is in very good hands.

Blitzen was definitely feeling all the excitement this morning. He was equally ready to get started this morning....pulling me into school!

All in all....great morning.

And no phone call yet!!!!

The start of a new school year!

2009-08-19T19:32:00.000-07:00

Tomorrow is the first day of school. We had open house tonight so the kids could see their new rooms and meet their teachers. When we walked into the 4th grade hallway this very special bulletin board was all decorated. It really brought tears to my eyes...

It is a simple tree. The leaves are the kids/teachers names. At the base of the tree is an australian shepherd. He is sporting a red vest with the name "Blitzen" on it!!!! um, one word.....AMAZING!!!!

I have never seen so much excitement. The staff adore him and absolutely see his purpose for being there. I am talking even the secretaries and lunch ladies!!!! I went to their staff meeting this morning and introduced him. Had a very warm welcome. Blitzen and I trained at the new school some. (this is the first year she has a locker...she is very worried about the lock). So I worked with him sitting at the lockers. He lays in his "place" like he hasn't missed a beat. And it's a new building!!! He is such a good boy and quite the charmer.

More pics tomorrow! First day of school pics... You know the ones where the kids say..."MOOOMMM! ENOUGH ALREADY!!! hehe....

great times with great friends...

2009-08-13T17:03:00.000-07:00

We got to spend a great day with great friends in a pool today....So much fun. It was nice just to RELAX today!!! We weren't on a time frame, had a nice picnic lunch, and enjoyed each other's company. The kids go back to school next Thursday so it was a nice "last hurrah."

I got a fantastic phone call while on our relaxing outing. Hannah's new principal is absolutely, positively top notch!!! I had called her a few days ago because I was not happy with the transportation situation for school this year. I didn't feel Hannah's safety was being taken into account. I knew her principal would be the perfect person to call. She is a principal, but she is also the mom of a special needs child. She brings a whole different spin to the table...And boy did she ever. Hannah and Blitzen will be totally safe on the bus now. She will have the same bus driver as last year (who is fantastic!!!). Hannah (and Blitzen) love Miss Debbie. She won't be on the bus long at all and will picked up and dropped off at the door. Yay!!

We go to school tomorrow so I can meet with her new teacher. (Also phenomenal!!) She wanted to get together before school starts so we can discuss everything. She wants to know more about Blitzen and how to best work with Hannah. Amazing, huh?? It is going to be such a great year. I am really looking forward to it...

take the good with the bad...

2009-08-09T12:38:00.000-07:00

We had a good week, but the seizures returned. The next night after my last blog, she had a tonic seizure; not too bad though. But last night....whew....that was brutal. She started getting really agitated early in the evening; I should have figured it was coming. By 9 pm I was giving her rescue med (versed). She was extremely aggressive, speech was slurred, drooling, and she was perseverating on sounds and words... The versed has been working well and fairly fast, but last night, it took an hour and 10 minutes to work!!! ugh. (It seems like eash time I give it to her it takes a little longer to work). Finally, at 10:20 she fell asleep. Talk about an ahhh moment. She slept fairly well last night and woke up today a little tired, but happy. This afternoon she is taking a very long nap.

I got a call from our case manager who is overseeing the VNS appeal. She said the insurance company received all the paperwork. So, we wait. It will be interesting to see how long it takes to get through "the system." It only took them ONE day to deny it!! I pray that it gets approved and we can get our appointment with the neurosurgeon.

A good/fun week...

2009-08-06T17:43:00.000-07:00

7 days seizure free!! WOW! It has been a long while since I have been able to say that. On top of that, Hannah has spent the week at her nana and papa's house with a good friend. It doesn't get much better than that (at least for her...I miss having her home!!!). I go to pick up the girls tomorrow....
Yesterday, Hannah's genetic doctor presented her case during their monthly case conference. This is a gathering of a lot of brain power!! They basically present the "stumper" cases to see if anyone has additional ideas of what could be going on. I am really looking forward to our follow up appointment to see if there are any new ideas....

SEIZURE FREE=GREAT WEEK!!!!!

still hope...

2009-07-30T17:49:00.000-07:00

Hannah had appointments with her cardiologist and geneticist. What a long day....She really hung in there like a champ though. Her blood pressures were very good. Dr. cardio decided to take her off the one BP med. Yay! (she is still on two different meds) We go back in a month to check them again and see if the adjustment was a good one.
Seeing the geneticist took the most of our afternoon. My head was spinning by the end. It had been almost two years since we had been there. They went over all of her history again. After going over potential diagnoses, I point blank asked him if he feels like she has an underlying syndrome. He said "yes." But, the difficulty is going to be finding it. Like before, nothing pops right out at them. They do feel she has too many things going on for them NOT to be connected some how.
We aren't going to do the muscle biopsy right now. They are doing a screener to see what it shows. We took 6 vials of blood. They are looking for several different categories of syndromes. Most of the tests will take 3-4 weeks to get the results. I left extremely exhausted, but with hope. I still have hope to find out if she has a syndrome.

A room fit for a princess...

2009-07-27T18:21:00.000-07:00

It has been a long time coming, but Hannah got her new bedroom this weekend. This past Feb, we had to buy Hannah a new bedspread because her old one was dry clean only. You ask, what's wrong with that? Well, every time she has a seizure, her entire bedding has to be washed. If not, her seizure "scent" will saturate her bedding and he could stop alerting with new seizures. SO, we promised her we would paint her room to match her monkey bedspread. (She is crazy about monkeys!!!) This was the weekend. Whew!!

It turned out so pretty. Truly fit for a princess... It is all done except for her bed. Papa is going to make her a platform bed next weekend. He is going to make the ledge wide enough so her BI-PAP machine will fit on it. That will be so nice!

We have a big doctor appointment week this week. She sees her cardiologist and has a genetics appointment, both on Wednesday. I think we are about to embark on a whole bunch of new testing. She is on three different blood pressure medicines now. The cardio doc said if her BP isn't down with this visit, she will have to aggressively figure out what is going on. (whatever that means). She is getting worried about her heart. I really don't think we are to the bottom of WHY she has high BP. We are just trying to treat the symptoms. It isn't working too well. But, that leads us back to genetics. I think they are going to redo some blood work and schedule a skin and muscle biopsy. The next step is to see if she has a syndrome, mitochondrial in nature.

So, we probably won't know much more after Wednesday, but hopefully we will be going in the right direction.

Oh, I don't think they are going to keep her on the Clonodine much longer. I called Dr. Neuro today. I do think it has helped her to SLOW down a little. She isn't quite as impulsive. And the seizures have slowed down slightly too. BUT, she is not sleeping well. She is moving, thrashing and talking more than normal. But the biggest concern is that in 3 1/2 weeks, she has gained 15 pounds!!!! not good. I really don't want that to be one more thing we have to worry about.... I am not sure what we will do now, meds wise. I still am waiting to hear about our insurance appeal with the VNS. Hopefully we will know something soon....

Total Frustration....

2009-07-17T18:17:00.000-07:00

Hannah has been so tired since returning from camp. She fell asleep as soon as her head hit the pillow last night and didn't wake up until 9:45 this morning!!! That is a record. She was really dragging around noon. I told her just to lay down and rest. She fell asleep for 2 1/2 hours!!! That is almost unheard of from Miss Hannah. I think she is feeling better now. And the best part is....NO SEIZURES!!!! Woo Hoo!!
Now for the frustrating part as eluded to in my title.... I got a call from a case manager today that Hannah's VNS (vagus nerve stimulator) surgery was denied by our health insurance. UGH!!! She said not to get discouraged yet. HA!! They are beginning the appeal process which involves more history given to insurance company to prove we have tried everything else and studies proving that VNS can be very successful. I believe this case manager really knows her stuff and will get this through. It will just take time.
All this from our MILITARY insurance (TRI CARE). Yes, the same MILITARY that has taken my husband away from his family for a year. It seems to me, this is the least they can do!!!!! I know this is just another hurdle...I get tired of jumping unnecessary hurdles!! We cannot even schedule our appointment with the neurosurgeon until it is approved through our insurance. (just the modulator part that goes in her chest is $30,000!!). So...we wait.... Hopefully the appeal won't take too long and they will APPROVE it for Heaven's sake.

Refreshed and Exhausted....

2009-07-16T19:24:00.000-07:00

My baby girl is home from camp!!! It feels so good to have her home. (Blitzen was happy to have her home too. He would actually cry when it was time to go to bed without her. He missed his girl!!)

As always, she had a fantastic time. It is time of renewing friendships, laughing, doing things you never thought you would do.... They jam pack their week full of activities. To name a few things...Hannah swam, rode in a canoe, zip line, rock wall, archery, horseback riding, target shooting with a BB gun, fishing, tie dying....are you tired yet??? Whew. She was very excited to report (and show pics) that she caught FOUR fish!! I was very impressed. As the director (who is phenomenal) said tonight to the kids, "you may have epilepsy, but it doesn't have you!" These kids can do anything!

She always seems so much older when I pick her up from camp. So many stories to tell. New friendships to talk about. Pictures to share. And memories that will stay with her forever...

Hannah is definitely refreshed after the wonderful week, but obviously very tired. We will see what kind of week she has. Normally the week after camp is filled with seizures, because of sleep deprivation. It is worth it...

Together again!!!!

Invaluable life lessons...

2009-07-12T17:58:00.000-07:00

The time has arrived again....... Hannah's favorite time of year. A place where she can feel absolutely normal.... Where everyone struggles with the same things. Everyone waits in the "medicine line" to get meds morning and night..... She is at Camp Dreamcatcher. A camp only for kids who have seizures. It is the norm at this camp. This camp has taught Hannah so much. It is her third summer. I will never forget the first time she went. She came home and proudly announced "Mom! Everyone there has to take medicine too!!!!" She understands now there are so many different types of seizures and how they can affect people so uniquely. Some of her very best friends are there. They chum around like peas in a pod for a week. I love that she can have this experience. I feel safe with her there too (although I am always thinking of her, and a little nervous). They have nurses and a doctor on staff. The counselors (many of them) are amazing. They LOVE these kids love and would not want to be anywhere else!

To make things even nicer this summer, they have a couple new, absolutely gorgeous cabins!!! Nothing like a new cabin with clean showers, no gum on the beds and the smell of NEW wood! They even have central air.... NICE!!!

We opted to not leave Blitzen with Hannah at camp. I really didn't want her to worry about what to do with him while she swims, rides horses, canoes, rides the zip line (YES, a 50 foot zip line. her favorite part. The first one to volunteer to go down!! Who knew???). I don't want to burden a counselor with taking care of him and honestly didn't have time to "train" them. I also thought it would be hot for him to be outside all week. SO, he and I are going to have several good training sessions this week. It is actually good for them to be apart once and awhile.... He was very sad to leave her though.... (she was sad for that part too).

She will have a great week of fun. I love that for her. Nothing else to worry about except having FUN!!! She deserves it.

The search is on....Again.

2009-07-08T16:02:00.000-07:00

I got Hannah's genetics appointment scheduled for July 29. I was amazed it was that soon. We are going back to continue our search for THE overall diagnosis. We were there about a year ago. We did all the basic genetic work up then and everything came back normal. They told me the next step would be to do a skin and muscle biopsy to see if it's mitochondrial in nature. I wasn't ready to go there. Who wants to put theis child through that?? But I don't feel like we have a choice now. All of her specialists feel like we need to do this. So we are.
Technology may have improved in the last year, so they may repeat some tests that were already done. We are seeing a different doctor this time, which may be a good thing. That remains to be seen.
Hannah has had several seizures over the last several days. She had one last night that was one of the harder ones she has had in awhile. Blitzen is having a hard time too. Because of all the medication changes her "scent" is changing. This confuses him. He knows it's there, but it's different. So, I continue to train with him almost every night until her medication is a little more stable. Hopefully then I can regain complete trust in him. He is still such a good boy! We are still madly in love with him.

LIFE WITH BLITZEN...

PURPLE DAY.....

hard times...

where has the time gone???

big day....

pics...

definite progress...

surgery...

shifted...

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

it's been awhile...

spoke too soon...

Still doing well!!!

Negative....

It's November!!!

and the verdict is....

home again...

frustrated....

EMU

~~what a week~~

still seizing...

~the aftermath~

It's that time again.....

new neuro...

more cheerleading pics.... cause she sooo cute!!!

FIRST in her class!!

Fair time...

First Football Game....

5th Grader.....

no big changes...

first week of cheerleading....

here we go....

absence seizures.... again

is there a connection???

testing....

Random funnies....

A BRAND NEW LOOK!!!!!

officially a 5th grader!

Mother's Day....

Loves the Lord...

Recorder Concert...

Here we come....

PURPLE DAY.....

playing the seizure game....

Home, Sweet Home....

New Neurologist...

a long shot.... but still hopeful....

Giggling girls....

10 YEARS OLD!!!!!

In the arms of Jesus....

prayers for a friend...

This deployment is OVER!!!

CHRISTMAS GIFT!!

Full Circle....

Happy Birthday Blitzen!!!!

Our boy is back!!!

Blitzen is sick....

nothig new to report yet....

montage of thoughts....

looking up....

beautiful story

Game Plan....

tonic clonic seizures have returned....

Halloween pics....

Rough go again...

pumpkin faces!

Exceptionally bad one...

Back to School

Flu, flu go away.....

One week at a time....

Piggy Flu...

more searching....

Dorothy and Tin Man...

nothing new to report...unfortunately

Fall Weekend Camp

still waiting...

SWEET SUCCESS...(unofficially anyway)

mixed bag....

Denied....again.

the plan....

what a week