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!!!!                          

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1 comment:

happy's mommy said...

Awwww...I love this. I love that Hannah is doing something so "normal"! I love that the coach is a nurse! And I can't wait to see pix of Blitzen with a jersey on!

...danielle

August 14, 2010 at 6:00 AM

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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....