Seize the day

Alex prepping Josie's head for the leads

Leads put on before the wrap

Wrapped up Medusa head

Our Compound in our private room. They never bring beds in for parents. I am so grateful they broke that rule tonight. This is so much more comfortable then a reclining chair. Thanks CHLA!!

Josie fast asleep. It will be interesting to see if she has any seizure activity while she is sleeping.

OK I mean literally seize today. We are officially at Childrens Hospital Los Angeles and Josie's video EEG is on and running. We arrived about 1 pm after a visit to the orthodontist, cleaning the house so it could be shown tonight and a trip to the district office to fill out more paperwork. It was a very busy morning. Alex, the EEG tech, put Josie's wires on the neurology floor and then when the bed opened up we went upstairs. Nice Noreen put in the request for us to have a private room. The request was granted but they couldn't accommodate us until this evening. Our roommate for a few hours was a 4 week old baby girl, Sunny. She is the tiniest little thing. Her airways in her nose aren't wide enough so she will have to have them surgically widened in the next few days. The sad part is that her mom only came by for about 20 minutes today. She didn't even hold her. She looked at her on the bed for a few minutes then sat in the chair and watched tv and left. It is breaking my heart that this sweet, innocent baby isn't even being held or comforted. I am not allowed by law to actually hold her, but I did keep going over and putting her pacifier back in and patting her back. I am sad we left the room for her sake. Maybe mom will come back tomorrow and stay. Please pray for Baby Sunny.

As for Josie, she is a trooper. I know we are in for something so minor in the scheme of things, but it is never the place you want to be. It makes you feel like something is so wrong and that she is sickly, which she isn't. It is actually harder then I thought to see her head wrapped up like this again. The girls had their heads wrapped like this after separation for at least 10 months. It is also foreshadowing what lies ahead which is really scary surgery wise. We will get through all of this to with the grace of God.

I hope that we actually capture enough episodes to be released by tomorrow night. Dr. Mitchell will come check the progress tomorrow. We have had about 4 since we have been here. She didn't have one for the first 4 hours. Slowly they have picked up pace. Let's just hope this testing will lead us to something that will help take her seizures away. I will update again tomorrow. Jenny and my hero, Josie