Thursday, February 26, 2009

Life is moving right along....


Things are still going very well with Blitzen. He continues to alert to Hannah's seizures. He has also started alerting to her seizure activity. Sometimes at night she doesn't have break through seizure, but she has many spikes and a slowing of her brain waveform. He can still smell that, it just isn't as strong as a full blown seizure.
Hannah and Blitzen are really enjoying school these days!! The kids are so excited to have him at their school. Hannah can't go down the hallway without someone saying "Hi Blitzen!! or He's so cute!!" He is doing better riding the school bus. I don't think he will ever "love it," but he definitely tolerates it. He has a mat on the floor at Hannah's feet. He stays there until they get to school.
We had a wonderful, but short, visit with daddy. He came home last Sunday and I dropped him off at the airport Wednesday. The airport security let me go through the security check point with a pseudo boarding pass. This way, we could be together until he boarded his plane. It was very nice to have those few extra moments together, kidless, I might add!! His battalion is heading to Kuwait by the end of the week. They will stay there two weeks and then fly to Iraq. It was really nice to spend some quality family time with him, but we already miss him dearly. It was nice for Gary to meet Blitzen. He was very impressed!! I know it makes him feel better knowing I have help with Hannah's seizures.
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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....