Hannah has been so tired since returning from camp. She fell asleep as soon as her head hit the pillow last night and didn't wake up until 9:45 this morning!!! That is a record. She was really dragging around noon. I told her just to lay down and rest. She fell asleep for 2 1/2 hours!!! That is almost unheard of from Miss Hannah. I think she is feeling better now. And the best part is....NO SEIZURES!!!! Woo Hoo!!
Now for the frustrating part as eluded to in my title.... I got a call from a case manager today that Hannah's VNS (vagus nerve stimulator) surgery was denied by our health insurance. UGH!!! She said not to get discouraged yet. HA!! They are beginning the appeal process which involves more history given to insurance company to prove we have tried everything else and studies proving that VNS can be very successful. I believe this case manager really knows her stuff and will get this through. It will just take time.
All this from our MILITARY insurance (TRI CARE). Yes, the same MILITARY that has taken my husband away from his family for a year. It seems to me, this is the least they can do!!!!! I know this is just another hurdle...I get tired of jumping unnecessary hurdles!! We cannot even schedule our appointment with the neurosurgeon until it is approved through our insurance. (just the modulator part that goes in her chest is $30,000!!). So...we wait.... Hopefully the appeal won't take too long and they will APPROVE it for Heaven's sake.
Friday, July 17, 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:
Oh hon...I am SO sorry about the insurance headache. I completely agree...that IS the least they can do for you! Unbelievable. It's so hard...just caring for a child with seizures...to then find the energy to battle for treatments. Ugh.
xoxo
...danielle
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