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.....

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....