This past weekend we made a trip to Columbus for the Army's reunion briefing. Yes, that means we are getting close to our reunion! YAY!! Of course, the big elephant in the room was....when our the troops going to be home??? And of course...they wouldn't say. I do understand it is for security reasons, BUT, it is really hard to plan anything with only 48 hours notice. We are hoping the reunion ceremony (which will be the first time we see him) will happen a few days before Christmas, but may not until after January 1st. I am telling the kids January. Better to be surprised than disappointed. We are planning some absolutely fun, fun, fun things for the reunion (of course, these are top secret too...as daddy may be reading this!!!). There will be tons of pictures later....don't despair!!
We are starting a new medication plan. Thank the Lord!! We are starting 2 new meds and increasing one that she is already on. But, only one change at a time. So, first up to the plate is Fluoxetine. We are hoping this will help level out her behavior swings (which will hopefully help decrease seizures. It's the whole chicken and the egg thing...). In about 4-6 weeks, we will start Depakote. This was her very first seizure medication. She had very low side affects but never really gained seizure control. But, 5 years ago, her seizures were completely different. So were are giving it another whirl, knowing that it is also a mood stabilizer. 2 for one!!! And lastly, we are going to increase her clonidine and give it 4 times a day. Hopefully this will help her to get to sleep and stay asleep. Apparently it really affects sleep cycles if not given at the right times during the day. Good to know!!! Maybe 6 months ago??
SO, she will stay on Diazepam temporarily until these other medications are in her system. Hopefully we can ge things under control...
Friday, November 13, 2009
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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....
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....
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