Long week for us all....

We have been in the hospital with Hannah since Tuesday. We are in the epilepsy monitoring unit trying to capture Hannah's seizures on EEG. This is necessary to determine if she can have brain surgery. Apparently her triggers include stress and increased activity level. These are things we don't have while laying a bed eating all day!!!! She has not had any big seizures while we have been here. It is very frustrating. We feel really stuck because there are really only two medications left for us to try. Neither of them look very promising. One works for one type of seizure she has and the other medication helps another type of seizure. But neither one are supposed to work on both!!!! ugh. We are looking more into the VNS (vagus nerve stimulator). There are mixed opinions among the doctors about this treatment. Both the medications and VNS have about less than 5% chance of having control of her seizures. This is why we were really hoping surgery would be an option for her. None of this leaves a very good feeling.

Blitzen has been doing spectacular!!! He acts like he has been doing this his whole life. The doctors and nurses have been so impressed (although we would be happier if he would have something to alert to!!!). He has been on the job comforting Hannah when she is upset. He lays with her in bed and just goes with the flow. He has really helped Hannah be more positive through the hospital stay.

We think we are going home tomorrow. In the morning the doctors will discuss what the next step will be. They don't really feel like there are too many options anymore. Again, not a good feeling!!!

Off Meds

Hannah is officially off her seizure medication. We are doing this hoping to induce seizures and catch them on EEG. We are still at home, which is scary, considering how bad her seizures could potentially be. As soon as she has a couple a rough ones, we will be admitted to the monitoring unit at Children's Hospital.
Up until today, we didn't really see anything significant. However, the latter half of the day at school, proved to be a rough one. She had a seizure (possibly more than one), to which Blitzen alerted to. Yay!! He will be working overtime the next couple of weeks. Hope he is rested up!!! This all seems so cruel to do to sweet Hannah, but it is the only way to see if she can have surgery. If we can get these on EEG we will have all the testing completed and the team can meet and make an informed decision. FINALLY!! "Thine will be done."

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.....

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!

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!!!

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.

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!!!