Time to update...

It has been a LONG few months. That is really no excuse for not keeping this updated, but honestly most of my spare moments I have been spending sleeping.

Averie has been in and out of the hospital since she started having seizures in Sept. 2010. This has been a very frustrating process because we just can't seem to get ahead of the seizures. Not to mention that they keep changing...one week it will be drop seizures and then the next week it was little absence seizures. Seems like at least once every couple weeks( or more often ) we end up in the ER trying to stop a big seizure. We are fortunate that our neurologist helped us make a Seizure Protocol Plan to hand over to the ER doctors so that Averie can be treated effectively and efficiently. Unfortunately it seems that every so often we get that one doctor who wants to start all over with her and refuses to follow protocol and we end up with a way longer hospital stay and unnecessary trips in the life flight helicopter. Our only break has been from Dec 21st - Jan 9th where she had no outward seizure activity. Since the 9th it has all started back up agian.

Averie has been a little trooper through this whole ordeal and has maintained her spunky stubborn attitude :) It seems like I'm the one who is struggling day to day. I KNOW the problem is that I haven't been sleeping. I get up at least three times during the night to check on Averie and make sure she doesn't have any night time seizures. Its exhausting...it doesn't help that I am within a month of having the new baby! It frightens me a bit as to what life will be like with a newborn around and Averie a constant concern. I pray for strength every day so that I can get through each day. I am so thankful for the huge amounts of support I get from Justin, as he is always willing to step in when I need a break. His family has been a blessing too, making me feel very safe and loved. I know they all will be there when I need them.

On Monday, Averie will meet with Dr. Saneto at Seattle Children's Hospital for her yearly checkup. I am hoping we will get some better insight as to what needs to happen to keep Averie as healthy as possible. Unfortunately I don't get to take Averie to this appointment since I can't be traveling right now. My parents are taking Averie for me which should work out well since they are both very well aware of Averie's situation and can talk with the doctor no problem. I'm hoping to be conference called in on the appointment so I can hear first hand what is being discussed and so I can ask questions as they come to me. In case I can't be called in on the appointment, I'm going to try and put together a notebook of questions that my mom can ask for me. I am so so so so thankful that my parents are able and willing to be able to help me out! I love them!

Well...now I am off to get some housework done while I wait for neurology to call and I need to check on Averie( she is happily cuddled in bed watching a movie ). Sorry this update was so general...I promise to give a full update after her appointment on Monday!

Another seizure...

STUPID ALPERS!!! I wish I could beat it up!

On Monday at 3:00 am I woke up to Averie having a seizure. She was sleeping with me in bed and it sounded like she was really congested or something. In my sleepy daze I tried to get her to cough up the gunk, but then I felt by her mouth and all I got was handful of wet stuff. I thought "bloody nose!" and turned on the light...that's when it was very clear that it wasn't blood, but saliva bubbling out of her mouth. I tried waking her with no response. I jumped up and yelled for my mom to call 911 because it was clear Averie was having a seizure ( it took a minute to get them to realize what was going on and I almost broke the phone trying to get it to dial...i was shaking SOOOO badly! ). I immediately got the rescue diastat and while my mom was on with  the dispatcher I gave Averie her first dose. Dad helped me get her downstairs to the couch where we watched her carefully. The seizure was tapering of ever so slightly so I gave her the 2nd dose of diastat. Almost instantly her body relaxed and she appeared to just be sleeping. Minutes later the EMTs were there and taking vitals. They said everything looked alright, but I warned them that most likely she would start to seize again. The decision was made to take her straight to Emanuel Hospital. I rode in the ambulance with her and at one point the EMT asked me to describe what seizure activity looks like. It ended up that she may have had a little seizure in the ambulance, but apparently it stopped on its own. He had me move to the back to sit by her so that I could point out any other seizure activity, but the whole rest of the trip she remained seizure free. When we got to the ER they got an IV going and gave her some meds to keep her tummy calm. She still hadn't had another seizure so after about an hour in ER we were moved up the pediatric unit. Averie slept most of the morning and only woke for little drinks now and then. Finally in the early afternoon she woke up more fully and proceeded to eat a chocolate chip cookie, a whole dish of mac n' cheese and drank a ton of chocolate milk. After talking with the neurologist and watching her closely they said that we would be able to go home! It was the general consensus that her daily meds needed to be increased , but that she was almost near where she needed to be since she only had the one seizure and  that it was easily stopped with the diastat. This is very similar to 2008 after she was first diagnosed, when it took several medicine adjustments to get her seizures under control.

Hopefully with these adjustments we can look forward to another year or two without seizures. Most likely we will be having to make adjustments all along the way as she continues to grow taller and gain weight. I will happily deal with this if we can keep her at her baseline. I just really hope she will not have any more seizures during the night. I am seriously considering setting up a video monitor in her room to watch for activity. If I don't do something I might never sleep well again!