Friday, January 21, 2011

big day....


I am having a hard time with her turning 11.   How can that be possible???  I have really been thinking about the day she was born.  We had a snow storm just like we had yesterday the day she was welcomed into this world.  She got a great present already... NO SCHOOL TODAY!!

We are getting ready fof her party tonight.  She is having 7 giggling girls over tonight.  I have arranged to have a face painter and balloon artist to come.  She is sooo excited!!  I think it will be loads of fun....  I will be sure to post pics later!!!

We had a fabulous neuro appt yesterday... I will post more about that later...

Friday, January 14, 2011


MAMA GOT A NEW CAMERA... OH YEAH!!!  So, indulge me, while I practice!!!


Such a handsome boy!!!!

What a yawn!!

This is Hannah's favorite spot to "pet" Blitzen.

He likes it too!!!

He is alerting Hannah to a seizure....

He's getting his reward...a stuffed squeaky monkey!

LOVE this pic....

Sweet shot...(she was pretending this blanket was her wedding dress...)

And onto some cheers....  :)

AWWW!!! love this pic with daddy!!!!

Monday, January 10, 2011

definite progress...

WOW... It's been awhile!!!  We had a fantastic Christmas.  We were able to spend the day together, play with new toys and enjoy each other!!
Hannah's seizures continue to be fairly well controlled (knock on wood).  I keep waiting for the "honeymoon period" to end.  She hasn't had any tonic clonics or myoclonics in the last month.  She has had a few absence and complex partials, but nothing like it was before the big increase in meds.  We go back to see Dr. Neuro at the end of the month for a follow up.

I think Hannah holds the record for the number of casts for a broken arm!!  She just got her NINTH cast today!!!  Today was different though...  Her arm has healed enough that she able to go into a cast BELOW her elbow!!  (She has been in a long arm cast since Thanksgiving Day).  She is tickled pink, but was having a lot of discomfort because it's been awhile since she straightened her arm!  Her joints were screaming!!!

She will be in this cast for three weeks and then she will go into a brace.  Hannah will have to wear the brace until June, when she goes back into surgery to have the rods taken out.  But, at least it will be removable so she can shower...

She is counting the days.... soon she will be ELEVEN!!!!!!!!!!!!  How is that even possible???????  I really don't know.  ugh

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....