Hannah started having some rough days again. I am not really sure why. I was really hoping that, with starting this new medication and being covered by diazepam, things would continue to go well. BUT, once again...Hannah does not, and probably never will, read THE manual. Poor Blitzen has really been working overtime. Thursday, he alerted a record 5 times... She was totally out of it all day at school. They said she was in slow motion; having obvious processing and comprehension difficulties.
We went to her neurology appointment on Friday. It went pretty well; I guess. There is something that just isn't sitting right in my "mama gut." I have decided that we are going to get a second opinion. I really feel like we are missing something (I have felt like we have always been missing something, but I feel, here lately, we are missing more...In the last 6 months she has been having so many changes and I just feel, we are missing something). So, I will start making some calls tomorrow. I have decided to go to Riley Children's Hospital in Indianapolis. Hopefully, it won't take too long to get an appointment....
So, for now, the plan stays the same. She is taking fluoxetine. In two weeks, she will start back on Depakote to hopefully get some sort of seizure control. Then, in about 6 weeks, we will change her dosage and fequency of her clonidine. This should help her sleep cycle. One change at a time. Seems to take forever, but oh so important...
This weekend, my parents came to visit. They helped us put out our Christmas decorations. I really appreciated the help. The house, inside and out, looks FANTASTIC!!! I just want to sit, in the quiet, and enjoy how pretty the house is....
Saturday was another VERY rough day for Hannah. It was tough for my parents to witness it firsthand. ALL DAY LONG.... Blitzen alerted 4 times and was bang on, as usual. He is so awesome!! We had to give some rescue meds towards the end of the day. Today, was better, but still had 2 alerts....We REALLY need to get to the bottom of this craziness!!!!
Sunday, November 22, 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....
1 comment:
I'm so sorry, hon.
...danielle
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