LIFE WITH BLITZEN...: August 2010

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.....

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....

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....

Based in Xenia, Ohio, 4 Paws For Ability strives to provide service dogs to families and children that struggle with life's daily challenges and who would otherwise be turned away by many other agencies. 4 Paws trains a variety of assistance dogs, including but not limited to seizure assistance, mobility assistance, hearing ear dogs and autism assistance dogs.

Through very generous family, friends, and community, we raised $11,000 for Hannah's seizure assistance dog. In January, 2009, we trained with Hannah's new dog, Blitzen, and brought him home two weeks later. What a life changing experience!! Within three days of being home, Blitzen started alerting to her seizures. Incredible!!! Hannah is now able to have more independence, including sleeping in her own bed. He goes everywhere with her; even school. He is quite the hit at school and is alerting teachers before her seizures begin.

This blog was initially created to help raise support and keep everyone up to date on the process of obtaining her service dog. Through this process I have found and followed so many other families who struggle with various disabilities and have learned so much. I hope this blogsite can bring some encouragement and maybe some knowledge to others...