Tuesday, December 21, 2010

surgery...

Last Wednesday Hannah had surgery on her arm.  What a time we had.  Things didn't go completely like we had planned (but then again... when does it ever???)
We arrived at the hospital, same day surgery, at 11 am.  Of course, she was fasting, and not happy at all.  I will NEVER, NEVER, EVER again be "add on" status.  ever.....  It was one of the longest day of our lives.  The surgeon was done with his afternoon surgery at 4 pm.  Still waited... and waited... and waited some more....
At 6:30, Same Day Surgery was closing.  We had to go somewhere.  Dr. Ortho wanted us to stay in a "holding" area, so we were as close to the OR as we could be.  As we learned, the surgeon was ready, the OR was ready, but there was no staff...  How can they have THIRTY-TWO OR rooms and not enough staff??????  SOOOO frustrating.  About 6 pm I requested them to give her fluids in her IV that she had placed in her arm, ALL DAY... Hannah was dehydrated.  Her poor little eyes were sunken in.

FINALLY at 8:40 PM, they came in to take her to the OR.  unbelievable.... truly.

Her surgery itself, went great.  It took about two hours.  He placed a pin (rod) in only one bone (the other one had soft bone and had actually started healing.  (We had decided to put a long arm cast on her after surgery so she would have more protection).  He felt the cast would be enough to help the smaller bone heal.  I was very much surprised to see the rod goes from her pinky finger to her elbow.  I had no idea it was going to be that long.  So she will wear the cast for 6 weeks.  Then she will wear a removable cast for 5 more months.  In June or July, Dr Ortho will go back in to remove the pin... Then she will have physical therapy for 3 or so months.  The way I figure, that will take us right back up to Thanksgiving!!!!  Who knew this would be a year long process????

Post op was crazy...  Hannah normally handles anesthesia well, as long as they don't use gas (which they didn't).  She woke up too soon after surgery and was really having a rough time.  She wasn't able to keep her O2 saturations up.  They started her on her BI PAP and added in oxygen. 

We finally got up to her room at 1:30 am.  We were on a trach floor so the respiratory therapists(RT) were right there... We had a WONDERFUL RT!!!!  Tera was sooo good to Hannah.  There wasn't anything she wouldn't do for our girl!!!  Thanks Tera, we appreciate you more than you will ever know!!  Tera continued to wean her oxygen down through the night.

By 8 am the next morning, Hannah started swelling and turned very flushed in her face.  Then she started itching.  They called in the dr.  He felt like she was having an allergic reaaction to something they gave her during surgery.  We will never know what that was....  Then about 1 pm, she started to have "wet lungs" and wheezing.  ugh  Hannah is not a wheezer....  We started breathing treatments.  We think she may have aspirated during surgery. 

Late Thursday afternoon, Hannah seemed to turn the corner and started feeling better.  We spent another night just to be sure her O2 sats were staying up.  They did.  98% all night!  So, we were able to go home late Friday morning.  yay!!!  It was quite the surgical experience....  She usually never has these issues with anesthesia.  I think maybe she was in deeper sedation and the longer surgery caused some of the oxygen issues.  still not sure.  It was really scary though. (what scared me the most when Hannah woke up in recovery, the very first thing she said to me was... "MOM, I CAN'T SEE... I CAN'T SEE!!!!"  WWWHHHAAAATTTT???????  Then she said, "MOM, I HAVE DOUBLE EYES, I HAVE DOUBLE EYES!!!!".  Then I knew she was having double vision.  whew.  That'll scare the poop outta anyone!!!

She rested all weekend and is doing so well.  It's weird to think that with that big ol rod in her arm she is virtually pain free!  (she hurt so much the first 3 weeks...)  It's finally stable.  Her bones aren't moving all around anymore.  Healing has begun!!!!

Monday, December 13, 2010

shifted...

Hannah had rough weekend full of broken arm pain...  I continued to give her pain pills to help take the edge off (she hates taking them because they knock her out).  I went back and forth. but finally decided to take her back in to see the ortho this morning. (we were just there on Friday... holding steady, no change).  However, today was a different story....

Her bones shifted again... BIG TIME.  They shifted 20 degrees in addition to what they were before!!!  ugh.  He said her bones will not heal straight on their own.  She needs surgery.  The dreaded words I was sooo hoping to avoid.

So, we go in Wednesday... Dr. Ortho will put two pins in.  She will have an incision by her wrist and one by her elbow.  She will have a removable cast.  The pins will stay in 6 months and then she will have another surgery to remove the pins.  yuck...

Nana is coming down to go with us, per request of Hannah.  She is scared.  This is out of her element.  Give the girl anything neurological and its piece of cake!  But this is something new and different.
I think we will be spending the night and I am glad for that.  With all of her underlying conditions, I think it's a good idea.  Not to mention they can really help with pain management...

I will keep you posted.  Hopefully this will do it!!!  I pray she can finally start healing now...

Friday, December 10, 2010

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

Blitzen turns 4 years old today!!  He is sooo awesome.  We ALL love him so so much...

A doggie birthday cookie!!!



He couldn't wait!!!  We were singing Happy Birthday to him!!!









Chowing down!!!!


AND... Hannah got a new cast today.  PINK SPARKLY!!!! Oh yeah, baby...  I THINK we have avoided surgery, unless she has a bone shift.  She doesn't have any bone growth yet, but the doctor's are hoepeful....

Check out all that sparkle!!!!!

Friday, December 3, 2010

it's been awhile...

It has been very eventful lately... First, let me say, Hannah seems to be in a good spot, seizure wise.  (hate to even say it outloud...)  I think we have found a good medication combo.  She has only wet 2 times in the last week and only one complex partial seizure.  HUGE!!!!  and very exciting!!!!  I pray that it stays this way for a little while and give us all a little break....

Speaking of break...  (hehe)

We traveled to Alabama Thanksgiving week to visit Gary's parents.  We got down there fine, survived the 12 hour drive.  We always drive through the night to make it easier on the kids (misery on us).  Thanksgiving morning Hannah and her cousins were playing at the playground area in grandma's housing development.  Hannah fell off the monkey bars and it was very evident she broke her arm.  She may of had a seizure when we fell, we really aren't sure.  We raced her to the ER at the very rural community hospital.  The hospital took such good care of her.  The xrays showed that she broke both bones in her arm; ulna and the radius.  It was a very ugly break.  They would have to take her to the OR to reduce (set) her bones.  Many hours later, we went back to grandma's house and finally had our Thanksgiving dinner!! (we didn't leave the hospital until 5 pm that day...starving!!!!)

They put her in a full arm cast, but split the cast and wrapped it in an ace bandage.  Now we had to figure out how to get this girl home, in a lot of pain, a 12 hour drive home...

We ended up splitting the 12 hours up into 2 days.  We stayed at a hotel the first night and drove the last 6 hours home the next day.

The following Tuesday we saw our pediatric orthopedic.  He thought the Alabama doctor set her arm very well. But, he felt we still weren't out of the woods that she may still need surgery.  A five year old kid would heal nicely, an adult would no doubt  need surgery, but she is right in the middle.  An almost 11 year old girl's bones don't grow as fast and may not grow as well...  So, if her bones shift any at all, she will have to have surgery.

her favorite colors!!!!!

We went back to see the doctor this morning because she started screaming every time she moved her arm.  Obviously something wasn't right....  They got us right in, did another xray... Her other bone, the one that lined up nicely when they set it, had shifted.  big time.  Now, it looks as bad as the other.  GREAT.... ugh
We are getting very close to approaching "aggressive measures."  There was no healing (in fact, we went the other direction).  She has to keep it in the sling, increasing her pain meds and go back in a week.  I think he will make a decision next Friday as to what we are going to do....if we will be heading to surgery.  And, oh, keep her still...  YEAH RIGHT!!!  he has no idea.....

Monday, November 15, 2010

spoke too soon...

UUUGGGHHHH!!!!

Well... at least we had some seizure relief.  Hannah just had a seizure where she soaked herself.... 

Here's hoping it was a fluke???



even though I know better......

Still doing well!!!

Hannah has only had TWO seizures in the last week!!!!!!  WOW!!!!  We are either in a nice "honeymoon" period of just increasing her meds OR we have finally reached a place that works with her body!!!!   It is so nice to have a break.  I hope it lasts for a little while....

Thursday, November 11, 2010

Negative....

The results are in.... she tested negative for the gene mutation....

I am still not sure how I feel about it.  I was hopeful, REALLY hopeful, to finally have a name...

So, according to Dr. Neuro, she will not have the diagnosis (meaning, he is not going to clinically diagnose her with Dravet Syndrome), but he is going to medically treat her like she has it....   hmmm....  not sure I totally get that. 
We are going to continue to increase her Depakote to try and maximum effect from it.  And, she is now taking it 3 times a day. We may be increasing her Klonopin at night as well... 

The good news is.... we have seen (in the last 4 days) a huge decrease in seizures!!!  She had a big whopper of a seizure last night, but before that, she hadn't wet herself in 3 days!!!!  So I am hopeful this much loved freedom, will last.  Chances are, because of knowing her past, it is honeymoon period from raising her meds.   But, even if it is, I WILL TAKE IT!!!!

Monday, November 1, 2010

It's November!!!

And that means.....





IT'S EPILEPSY AWARENESS MONTH!!!!!



So get out your purple and support all the very brave kids who fight the seizure monster every day!!!!!




btw. STILL no phone call regarding Hannah's genetic results... STILL waiting.... not so patiently.........

Thursday, October 28, 2010

and the verdict is....

we don't know yet....


UGH!!!

Results are NOT in... They should be there tomorrow or Monday.  So we wait... some more....

Dr Neuro decided to add an afternoon dose of Depakote.  So she will now get a dose at lunchtime.  We did labs.  They wrote a script for pull ups.  We can get them through DME (durable medical equipment) company.  They think between our primary and secondary insurance that the pull ups will be covered!! YAY!!!

so, for now, we keep on waiting....

Wednesday, October 27, 2010

home again...

We left the hospital on Monday morning....extremely frustrated.  No seizures or wetting whilst at the apparently, too fun to be at, hospital!!!  She still had the same abnormal spikes and wave slowings in the frontal and temporal regions.  This was mostly on the left side, but some on the right side too...

I really did not think these seizures were brought on by stress and over stimulation.  I was wrong.  She went to school yesterday and started seizing and wetting again.  ugh...  (no big surprise though)... She has started wearing pull ups now.  Morning and night.  She actually likes them better than poise pads.  Now I am searching to see if I can find help in paying for them...If anyone has any secrets, do tell!!!

So, tomorrow we go to neurology for her follow up.  Good news is, she has finally adjusted to the increased dose of Depakote.  I really think the behavior and increased seizure issues a couple weeks ago were because we increased too fast.  She has leveled off back to her normal...

We are hoping (keeping our fingers crossed) that the Dravet report is back.  It will only be 4 weeks, but the Dr. felt there was a good chance it would be there.  I am SOOO NERVOUS....  If she is positive for the gene mutation, more than likely he will change her meds completely (now that we are leveled off!!).  There is a good combination of medications that work well with Dravet kids.  If she is negative for the gene mutation... I have no idea what's next...  I guess that's what Dr. Neuro gets paid the big bucks for!!!  I feel like we will be back at square one....

Hopefully tomorrow is THE day.... the day we find out (after 9 years of searching) what syndrome Hannah has....  (BTW... still feel very torn as to how I feel about this... I will be absolutely relieved to know...but devastated with what it is.  Not a great diagnosis at all....)

Saturday, October 23, 2010

frustrated....

Hannah has wet her pants almost every day, several times a day, since July....  We get to the hospital, all hooked up to leads, me... very excited to see what these seizures look like... and what happens????






NOTHING!!!!!!!!



UGH!  This is confirmation that one, this is not a urology problem and two, these seizures are also brought on by stress and over stimulation.  There is still hope, but it's fading fast to be honest.  I get so frustrated when we go to all this trouble and don't see her seizures.  She does continue to have almost constant spike and waves in her left frontal lobe (that's on full dose of meds).  They just aren't breaking through.  Apparently nana and I are not stressful enough!!!!

So we wait....

Please wait and PRAY with us.  We need to know what these are and where they come from....

Thursday, October 21, 2010

EMU

Tomorrow....


off to the hospital we go.....


Praying we are able to see what these crazy seizures look like, where they are coming from, how often... you get the idea....


I will keep you posted...

Friday, October 15, 2010

~~what a week~~

Hannah and I went back to see her neurologist yesterday.  She was totally out of control.  I think we would have ended up in ER if we didn't have an appointment.   We all agreed this increase in Depakote was toxic to her system.  So, he lowered her dose back down and added in Klonopin at night (and also to use as a rescue med for clusters).  I think they are just buying time.  We are waiting for the Dravet results (hopefully will be back in 2-3 weeks).  If she is positive for it, then Dr. Neuro will be changing her meds all together.  So, he didn't want to change anything yesterday just to potentially change it again in two weeks.  I agree.  So, they want us to go back in two weeks to see how she is doing.  He also decided to put her in the monitoring unit to see what these seizures look like, how her EEG has changed, how many... and so on...  I have to admit, I am anxious to see how her EEG has changed.  They were able to get her in next Friday, the 22nd.  This should only be a 3 day stay... Hopefully seizures WILL cooperate!!!

She is already better today... MUCH better.  Amazing what lowering her dose did for her!!!  wow.  I still kept her home from school just to make sure she was more stable.  So happy she is feeling better...

Tuesday, October 12, 2010

still seizing...

Hannah cannot catch a break from this increase in seizures...  She is having a rough go at night with tonic's and tonic clonics; and a rough time during the day with absence and complex partials....  When she got up this morning, she was acting drunk.  really drunk....  I called her aide at school and gave her a heads up and sent Hannah to school.  The aide called me later, apparently the first half of the day wasn't too bad, but after lunch, nothin but seizures.  She was so out of it.  And then she fell asleep and they couldn't get her to wake up.  So, we brought her home early.

I called neurology again this afternoon.  They want her to come in on Thursday.  We may be looking at a med change...  I am hoping for an increase....

Monday, October 11, 2010

~the aftermath~

fabulous time at camp...

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

played with old friends...

made some new ones....

and became very sleep deprived=

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

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

Friday, October 8, 2010

It's that time again.....

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

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

Sunday, October 3, 2010

new neuro...

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

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


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










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

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

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



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


•behavior and developmental delays


•movement and balance issues


•growth and nutrition issues


•sleeping difficulties


•chronic upper respiratory infections


•sensory integration disorders


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



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


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




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

Sunday, September 19, 2010

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

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

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

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

is that not adorable???













Sunday, September 5, 2010

FIRST in her class!!



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

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

Friday, September 3, 2010

Fair time...

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

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









Thursday, August 26, 2010

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.....



video















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.... :)

Monday, August 16, 2010

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....

Thursday, August 5, 2010

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!!!!                          

Tuesday, August 3, 2010

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....

Friday, July 30, 2010

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....

Wednesday, July 14, 2010

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???

Saturday, July 3, 2010

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!!!!!

Monday, June 14, 2010

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?  : )

Sunday, June 13, 2010

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!!!

Monday, June 7, 2010

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.....

Monday, May 10, 2010

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!!!!!

Thursday, April 29, 2010

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!!!!!

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....