Thursday, December 31, 2009

This deployment is OVER!!!

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!!!

Friday, December 18, 2009

CHRISTMAS GIFT!!

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....

Monday, December 14, 2009

Full Circle....

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.....

Thursday, December 10, 2009

Happy Birthday Blitzen!!!!


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!!!!


Tuesday, December 8, 2009

Our boy is back!!!

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!!!

Monday, December 7, 2009

Blitzen is sick....

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.

Thursday, December 3, 2009

nothig new to report yet....

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.....

Wednesday, November 25, 2009


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????










Sunday, November 22, 2009

montage of thoughts....

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

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

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

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

Friday, November 13, 2009

looking up....

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

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

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

Tuesday, November 10, 2009

beautiful story

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




Friday, November 6, 2009

Game Plan....

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

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

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

Thursday, November 5, 2009

tonic clonic seizures have returned....

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

Sunday, November 1, 2009

Halloween pics....

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



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




Acting silly!!!  How cute are they???




nice background at the harvest party...




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



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

Thursday, October 29, 2009

Rough go again...

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......

Saturday, October 24, 2009

pumpkin faces!

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...

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....

Friday, October 23, 2009

Back to School

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....

Wednesday, October 21, 2009

Flu, flu go away.....

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.....

Monday, October 19, 2009

One week at a time....

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.....

Thursday, October 15, 2009

Piggy Flu...

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!!!

Wednesday, October 14, 2009

more searching....

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.

Saturday, October 10, 2009

Dorothy and Tin Man...

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!

Thursday, October 8, 2009

nothing new to report...unfortunately

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..... 

Sunday, October 4, 2009

Fall Weekend Camp

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....

Thursday, October 1, 2009

still waiting...

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......

Tuesday, September 29, 2009

SWEET SUCCESS...(unofficially anyway)

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....

Monday, September 28, 2009

mixed bag....

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....

Saturday, September 26, 2009

Denied....again.

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.

Tuesday, September 22, 2009

the plan....

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

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....

Saturday, September 19, 2009

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

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!!!!

Sunday, September 13, 2009

Daddy's home!!

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...

Wednesday, September 9, 2009

On the mend...

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...

Tuesday, September 8, 2009

torticollis...

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....

Thursday, September 3, 2009

Proving to be true...

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...

Saturday, August 29, 2009

Proud mama!











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!!!

Friday, August 28, 2009

We LOVE Dr. Neuro!

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....

Monday, August 24, 2009

I love that dog!!!!

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!!!!!

Thursday, August 20, 2009

First day of 4th grade!!







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!!!!

Wednesday, August 19, 2009

The start of a new school year!







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....

Thursday, August 13, 2009

great times with great friends...











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...

Sunday, August 9, 2009

take the good with the bad...

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.

Thursday, August 6, 2009

A good/fun week...

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!!!!!

Thursday, July 30, 2009

still hope...

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.

Monday, July 27, 2009

A room fit for a princess...











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....

Friday, July 17, 2009

Total Frustration....

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.

Thursday, July 16, 2009

Refreshed and Exhausted....






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!!!!














Beautiful Hannah...

How this journey started....

Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.

About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.

About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.

Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....