testing....

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....

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!!!!!

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!

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....

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...

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...

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...