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......

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....

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....

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.....

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.....

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!!!

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.

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!

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..... 

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....

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......