Friday, April 17, 2009

New pics!!
















I took Hannah and Blitzen to Portrait Innovations to have their pictures taken together. It was a wonderful photo shoot. Danielle did a fantastic job with both of them. She went above and beyond to make it a great experience!!
The duo continues to do fantastic. He is alerting to her seizures at home and at school. We continue to be amazed at how accurate he is!!! Their bond continues to grow every day. It is so sweet to see how he checks on her through out the day. So sweet!!!
We are now weaning Hannah off of her medication. By the first or second week of May, she will be off meds completely. We will stay at home until her seizures are coming fast and furious then they will admit her to the monitoring unit that day. They have assured us they will have a room for us. That remains to be seen!!! We will be staying in the hospital as long as it takes to get these seizures on EEG. Hopefully then we will know if she will be a surgical candidate.....

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.

Friday, February 27, 2009

Awesome day at school today!

I received a phone call from Hannah's teacher around lunch time today. She informed me that Blitzen alerted to Hannah during her wellness class!!! Blitzen was sitting with Hannah's aide and all of the sudden, he had to be with her. The aide tried to get him to sit down, but her wanted nothing with that. Then she realized what he was doing. She let him go over to Hannah and he sniffed her top to bottom, especially around her mouth. Then he sat down and "pawed" the aide!!! Exactly like he trains!!! yipee. Up until then and even an hour afterwards, she was acting fairly typical, but then her behavior completely changed. She became extremely tired, almost out of it, drooling, and difficulty recalling information. We are so proud of Blitzen; definitely worked hard today!!! I think the nay sayers (few in numbers) are rethinking their attitude towards Blitzen now. Good boy Blitzen!!!

Thursday, February 26, 2009

Life is moving right along....


Things are still going very well with Blitzen. He continues to alert to Hannah's seizures. He has also started alerting to her seizure activity. Sometimes at night she doesn't have break through seizure, but she has many spikes and a slowing of her brain waveform. He can still smell that, it just isn't as strong as a full blown seizure.
Hannah and Blitzen are really enjoying school these days!! The kids are so excited to have him at their school. Hannah can't go down the hallway without someone saying "Hi Blitzen!! or He's so cute!!" He is doing better riding the school bus. I don't think he will ever "love it," but he definitely tolerates it. He has a mat on the floor at Hannah's feet. He stays there until they get to school.
We had a wonderful, but short, visit with daddy. He came home last Sunday and I dropped him off at the airport Wednesday. The airport security let me go through the security check point with a pseudo boarding pass. This way, we could be together until he boarded his plane. It was very nice to have those few extra moments together, kidless, I might add!! His battalion is heading to Kuwait by the end of the week. They will stay there two weeks and then fly to Iraq. It was really nice to spend some quality family time with him, but we already miss him dearly. It was nice for Gary to meet Blitzen. He was very impressed!! I know it makes him feel better knowing I have help with Hannah's seizures.

Thursday, February 12, 2009

Home and doing GREAT!!

We are home from 4 Paws and settling in. Blitzen has really transitioned well to our home. He sleeps in Hannah's bed every night and doesn't get up unless he is alerting....that's right, he is alerting to Hannah's seizures!!!! His first alert was Monday night at 12:45 am. He got up and came to my room and woke me up. I waited 15 minutes and Hannah had a seizure. 30 minutes later, she had another one. What an amazing experience. I have never been "waiting" on one of her seizures before. Last night, he alerted again, this time 20 minutes in advance. Wow!

We still train and practice his skills everyday. He does so well.

We started going to school on Monday! What a pro. He seems like he has been doing it for years. We have two mats for him, one in each of her classrooms. He goes to all her specials and does fantastic. I went to school with them Monday-Wednesday. I went back to work today and Hannah and Blitzen went to school!! They did great; even rode the bus!!!

Hannah and Blitzen have quite the celebrity status. All the kids (and most teachers) are so excited, but very respectful.

He is an amazing dog. We feel so blessed to have him. It still seems surreal that after a year long process, he is here!! He is home!!!

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....