Monday, March 23, 2009

Weekend at Camp DreamCatcher...


This past weekend Hannah was able to catch up with all her friends at Camp DreamCatcher. It is an epilepsy camp at Camp Kern in Oregonia, Ohio. She has been going to Summer camp (week long), Fall camp (weekend) and Spring (weekend) since she was 7 years old. It is wonderful time to just be a kid and do fun stuff. Everyone there can let their guard down because everyone there has seizures. It is the norm at this camp. It has been a wonderful experience for Hannah to meet other kids who go through the same ups and downs that she does. She looks forward to every camp and is sad to leave when it's over. Usually she is very sleep deprived when she gets back and she usually will have increased seizure activity for the next week, but it's worth it.

Blitzen wasn't a camper at camp this time. We decided to keep him home so Hannah could just have fun and not worry about anything else. This summer, I will work with a counselor so they can be the main handler while she is at camp. I will have to go through a little training with them. Believe me, there are many willing participants! They did get to meet Blitzen when we dropped Hannah off and were very impressed!

Friday, March 13, 2009

Rough week...


Hannah had several seizures on Tuesday and Wednesday this week. Blitzen was definitely on the job but he was slightly confused. We had increased Hannah's medication last Friday. That can change the scent she gives off slightly. Blitzen knew he smelled it, even though it was a little different. Also, to add to the confusion, her seizures were different than she has had before. That could smell slightly different too. Nonetheless, Blitzen did a great job. He was extremely nervous and unsettled and stayed right by her side. Her teachers at school have noticed that even in the latter half of the week, he has not wanted to leave her side. What a blessing he is to our lives!!
We have decided that she is going back into the hospital monitoring unit in May. We really need to capture seizures on EEG. This time we are going to take her off all her medications at home. She will still attend school. We think that is one of the main stressors that bring her seizures on. Once she begins having hefty seizures, they will admit her immediately. This way, hopefully, we won't sit up there a week with no action!! It is a really tough thing to go through, but very necessary to see if she is able to have surgery. The doctors still haven't given up on that possibility.... This time we will have the amazing Blitzen by our sides!!!

Thursday, March 5, 2009

Doctor's appointments in Cincinnati

Hannah and I had a long day of doctor's appointments yesterday. This was Blitzen's first trip to the hospital. He did great!! He was the star of the show, as usual! First we saw Dr. Wessellkamper in neurology. He was very excited to meet Blitzen and happy to hear how well he is alerting to her seizures. He isn't happy, however, with how many seizures she has been having. He is increasing her medication to see if this will decrease the amount of seizures. Ultimately, our goal is seizure free, but he said it is looking less and less likely that we will get to that point. He is going to talk with Dr. Lee to hear his thoughts on going back into the epilepsy monitoring unit. He felt we should still pursue the possiblity of surgery. We will probably be going back in the summer....
Our next appointment was with Dr. Urbina (hypertension). Unfortunately, we did not have time to eat lunch in between appointments, Not a good thing especially because we had to wait an hour and a half to see the doctor!!!! Hannah was completely done and melting down. It was not pretty. Dr. Urbina was very happy with Hannah's blood pressures and wants to keep her medication the same. She wants to do another echocardiogram within the next six months.

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....