Invaluable life lessons...
The time has arrived again....... Hannah's favorite time of year. A place where she can feel absolutely normal.... Where everyone struggles with the same things. Everyone waits in the "medicine line" to get meds morning and night..... She is at Camp Dreamcatcher. A camp only for kids who have seizures. It is the norm at this camp. This camp has taught Hannah so much. It is her third summer. I will never forget the first time she went. She came home and proudly announced "Mom! Everyone there has to take medicine too!!!!" She understands now there are so many different types of seizures and how they can affect people so uniquely. Some of her very best friends are there. They chum around like peas in a pod for a week. I love that she can have this experience. I feel safe with her there too (although I am always thinking of her, and a little nervous). They have nurses and a doctor on staff. The counselors (many of them) are amazing. They LOVE these kids love and would not want to be anywhere else!
To make things even nicer this summer, they have a couple new, absolutely gorgeous cabins!!! Nothing like a new cabin with clean showers, no gum on the beds and the smell of NEW wood! They even have central air.... NICE!!!
We opted to not leave Blitzen with Hannah at camp. I really didn't want her to worry about what to do with him while she swims, rides horses, canoes, rides the zip line (YES, a 50 foot zip line. her favorite part. The first one to volunteer to go down!! Who knew???). I don't want to burden a counselor with taking care of him and honestly didn't have time to "train" them. I also thought it would be hot for him to be outside all week. SO, he and I are going to have several good training sessions this week. It is actually good for them to be apart once and awhile.... He was very sad to leave her though.... (she was sad for that part too).
She will have a great week of fun. I love that for her. Nothing else to worry about except having FUN!!! She deserves it.
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:
Praying Hannah has a fabulous week!!
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