Friday, March 13, 2009

Rough week...


Hannah had several seizures on Tuesday and Wednesday this week. Blitzen was definitely on the job but he was slightly confused. We had increased Hannah's medication last Friday. That can change the scent she gives off slightly. Blitzen knew he smelled it, even though it was a little different. Also, to add to the confusion, her seizures were different than she has had before. That could smell slightly different too. Nonetheless, Blitzen did a great job. He was extremely nervous and unsettled and stayed right by her side. Her teachers at school have noticed that even in the latter half of the week, he has not wanted to leave her side. What a blessing he is to our lives!!
We have decided that she is going back into the hospital monitoring unit in May. We really need to capture seizures on EEG. This time we are going to take her off all her medications at home. She will still attend school. We think that is one of the main stressors that bring her seizures on. Once she begins having hefty seizures, they will admit her immediately. This way, hopefully, we won't sit up there a week with no action!! It is a really tough thing to go through, but very necessary to see if she is able to have surgery. The doctors still haven't given up on that possibility.... This time we will have the amazing Blitzen by our sides!!!
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1 comment:

The Plunks said...

Hey! I finally figured out I could follow your blog on my blog, so I'm keeping up better now! Sorry this has been a rough week, but GO BLITZEN!!!! I hope Hannah had a great birthday, too. Maddie keeps saying we need to email Hannah (but never when we're near a computer, LOL). One of these days! We miss you guys and think about you often. I know it wasn't easy to say goodbye to your hubby again... we pray for you guys and appreciate your sacrifice!

March 19, 2009 at 6:47 PM

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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....