LIFE WITH BLITZEN...: November 2008

Thursday, November 20, 2008

Epilepsy Monitoring Unit

Neurology called today to schedule Hannah in the monitoring unit. We will be heading to Cincinnati January 5-10. This will be an exceptionally emotional time as Gary's military ceremony is Jan 3rd. That will be the last time we see him for one year.
However, we are excited to get this last step out of the way to see if she is a surgical candidate.....

Wednesday, November 19, 2008

Wonderful News!!

We just found out today that Brookville VFW is paying for our hotel stay while we are training at 4 Paws!!! I cannot believe the generosity and how this community has come together to help us. It really is overwhelming and so nice to know there are still nice people in the world....What a beautiful message that is sending to our children.

We got word yesterday that Hannah will be going back into the epilepsy monitoring unit soon. They will be calling to get her on the schedule. It would be wonderful to have our dog with us for this trip to the hospital!!!

Only 68 days until training!!!!! (but who's counting????)

Monday, November 17, 2008

We have the class dates!!!

It has been a while since I have updated....sorry.... We officially have all of the money in for Hannah's dog. They have started training her dog, though we do not know which dog it is yet. We will find out two weeks before class who the new member of our family will be. The anticipation is definitely building!! The February class dates at 4 Paws is January27-February5 2009. (That is 70 days from today!!!) I was so glad it was earlier rather than later! It is so nice to have a date, as it seems to really make it official. I was able to reserve our hotel and figure out other arrangements now that we have dates.

Hannah is doing okay. It is a rough time for her right now. We purposefully have her on a lower dose of medication so we can establish some regularity of her seizures. We are going back into the epilepsy monitoring unit at Cincinnati Children's Hospital soon so we can capture a couple seizures on EEG. Once we have that, the neurosurgery team will meet and discuss whether surgery is an option for her. If they decide to go ahead, things could move pretty quickly....we shall see.

Gary is officially on active duty status. He is training in Ohio or Michigan everyday now. January 3rd is Gary's official ceremony and then we won't see him again until next January. (He will still be in the states until March, and then to Iraq). We are trying to prepare for his departure, but it is difficult to anticipate until it actually happens. It helps looking forward to bringing Hannah's dog home.

This picture of Hannah was taken at the fall weekend retreat of Camp DreamCatcher. Hannah has made so many friends at camp. They all have one thing in common.....epilepsy. She loves going to meet up with her friends.

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....