Proud mama!
Allow me to indulge....
I am so proud of Josiah tonight. He has been BMX racing for a few months now. He loves it! Tonight he won first race! FIRST PLACE!!! He worked so hard and got the BIG trophy tonight. Hannah goes to all the races and is his biggest cheerleader!! (she says she wants to race too. Uh.... no!! Seizures and BMX racing don't mix).
Way to go Josiah!!!
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....
1 comment:
Hi,
Big congrats to Josiah for his 1st place accomplishment!
Thank you for being an active voice in the Epilepsy & Seizures Community. I am the Director of Blogger Relations at Wellsphere and I believe that you would be a valued resource in our HealthBlogger Network, which currently has over 2,600 of the best health writers on the web.
After reviewing your blog, I see that you meet our standards joining, so I'd like to invite you to participate as a Top Health Blogger. As a Top Health Blogger, you would republish your writing on the Wellsphere platform (now with over 6 million visits a month), and yet you retain ownership and all rights to the control of your content.
If this opportunity interests you, please visit http://www.wellsphere.com/health-blogger or email me at hua [at] wellsphere [dot] com.
Have a wonderful day,
Best,
Hua
Director of Blogger Networks
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