Yesterday was a bittersweet day. Daddy left to go back to Iraq, but Hannah was seizure free!! The first day in a nine days. No alerts, no rescue meds, no crazy behavior!! That was really sooo nice. Of course, this on the eve of an ambulatory EEG. So, I am thinking, is this the end of the valley we have been in or are we just taking a one day break???
We got up bright and early today (okay, not so bright out, quite still dark actually). I got the boys to the sitter and Hannah and I were on the road by 6:15. An amazing feat in itself....Hannah did FANTASTIC getting hooked up. It is really kind of sad. She has done it so many times that the smell and the whole drama of it, doesn't even bother her anymore. I think she was just happy , and even said, "at least I don't have to stay 10 days or have an IV"!!! What a trooper. We had one of our favorite techs help hook her up. She takes good care of my girl. So, hoodie and hat in place (went shopping at Justice for new apparel) we were off.
We got to school and she a little apprehensive, but went in like the champ she is. I was sooooo proud. I gave the teachers a couple instructions about the diary and button to push and I was off. Hoping for the call today....the call I got every day last week.... No alert. No seizure....No strange behavior....
WHY....WHY...WHY... when we get hooked up to record these stupid things, nothing happens???? ARGH! I must admit that I have rekindled that tiny glimmer of hope that maybe they could pinpoint an area where these are coming from. Still hoping for that cure. Resection....
We don't go back to unhook until 2 pm tomorrow. There is still hope....
Meanwhile...I have been on the phone to anyone I can think of about this second denial. The case manager got the rep to talk with Dr. Neuro today. He is arranging to have a "peer to peer conference" with some director of appeals at TRI CARE. He will plead Hannah's case to them. Dr. Neuro's nurse had a very good point today....She said it probably isn't even a neurologist. For all we know, it's a gynocologist who doesn't even know what a VNS is!!!
So we will keep on keeping on....
Monday, September 28, 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....
2 comments:
Are you kidding me???? I know a little 5 year old boy who was implanted with a VNS here locally! And that was a year ago...undoubtedly there are even more cases of children under 12 benefiting from a VNS?! Honestly...it's one of those time when I'd be tempted to get the media involved. But then I'm all hopped up on advocacy right now...
But I think if Hannah is having daily seizures...and if Hannah's neurologist is agreement that this is the next step...then there should be no reason for denial!
I'm sorry, hon.
(((((((hugs)))))))
...danielle
Delurking to let you know that I am praying for you and your family.
I know what it is like to battle insurance companies: I did it for 3 years!!! UGH! Fight to the finish and you will eventually win; it just sucks that it has to happen that way...while your child waits!
I, too, have a Hannah with epilepsy. She's 5 and was just diagnosed this past Jan.
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