Sunday, October 4, 2009

Fall Weekend Camp

Hannah spent the weekend at Camp Dream Catcher. The camp has a fall and spring weekend retreat so the kids are able to see each other during the year.   I love to see her face light up when she is reunited with all her friends there.  I am so amazed at all the activities they jam pack into one weekend!!  She definitely brings more home than what she went with....  It doesn't hurt that she is the craft queen!  She made several bottles of sand art (actually salt art....they colored salt by rubbing sidewalk chalk on it and then poured them into the bottles), beaded necklaces, earrings, made candles, and even a beautiful stepping stone with colored glass.  They went horseback riding, canoeing, zip line, hiking, campfire, played gaga (her favorite) and even came home with red streaks in her hair!!!  hmmm, hopefully that is washable red streaks!!!!

Her counselor did say that she got sad and started crying on the first night because she missed Blitzen!!!  Let me tell you, he missed her too!!!  I think he gets depressed when he is away from her.  He lays in her bed just looking out the window.... awww.  We keep him home while she is at camp because of all the activities they do.  I don't want them to be responsible for him while she is having fun.  And, I think it is good for them to be apart once in awhile.  I take advantage of doing some training with him while she is away.

Hannah's great friend Jacque.  She has a seizure dog named Parker....


Saying good bye to great friends.... (Notice the red streaks in Hannah's hair???)


Reunited with Blitzen.  They were both sooo happy....


So pretty.....and so happy....
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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....