First Football Game....

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.....

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...

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....

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....

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

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???

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???