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Hi I’m Jen- I'm one lucky lady to be married to the most wonderful man, Jason. I am a mother to three beautiful children, Grant, Norah, who was born with hydrocephalus, and Mason. I love spending my time with my family. I also like to challenge myself with new things. I'm on a constant quest to become more organized, it may never happen but it's a dream. I currently work part-time as a RN in an emergency department. I love this journey of life that I am on with God by my side, knowing that all things are possible when you Believe.

Tuesday, June 14, 2011

What super power do you want?

                                   
X-ray Vision - that is the super power I would love to have!! X-ray vision would help make life so much easier especially with what's going on with Norah these days.

Way back just after Christmas and about to head to Mexico, Norah had her first episode of vomiting. Grant was also vomiting at the same time so we chalked it up to a virus and rolled with it. Then while in Mexico, Norah had another episode of vomiting that we thought was related to the heat, she seemed to not like the hot sun in Mexico. Once home no more vomiting until about three weeks later, shopping in Bed, Bath and Beyond. Vomit everywhere, on Norah, on Mommy, all over the cart and the floor around us. This was becoming suspicious, we started to keep track.

These episodes always happen at the same time of day. Norah will have a change in appetite for the day, be cranky. she becomes very quiet, then starts to cry, a cry that is different than her 'normal' cry, then within a minute she's vomiting. She is patient with us as we clean her up, then about an hour after all this has happened she sleeps, and sleeps well until the next morning. She'll wake up at her typical time, usually not quite back to herself, but within a few hours it's like it never happened.

Fast forward to May, when Jason is out of town on a business trip. Norah had thrown up the last two weeks on a Wednesday night, and this week it was the same. It was too concerning to not bring this to the attention of her doctors, we had watched this pattern form and now it was time to see if something more serious is going on.

We were able to get in for a quick MRI the next morning and saw one of the PA's that work in neurosurgery. Norah's MRI had little change since the last and she was back to herself at this point. We discussed the possibilities of intermittent shunt blockage that usually will lead to a failure. He also thought it was worthwhile to do an EEG to check for any seizure activity, and then to followup with Norah's neurologist.

As we were leaving the office, another patient was cancelling their EEG for the next morning. We were happy to take the appointment versus waiting a month for the next available appointment. Isn't it nice when everything works out like that - one of those thank you Lord moments, knowing God is there helping me as I care for Norah, while making sure Grant's needs were being met and being 36 weeks pregnant myself.

Norah EEG went well, "nothing exciting" per the tech that performed the test. The results would be available in 7-10 days and we could review those with our neurologist. Ha! Easier said than done. Norah had been discharged from her neurologist back in December, and since then that neurologist had left the hospital. Now we had to become a new patient and wait for the next new patient appointment - August. Really? August? So now we wait. I would like to think if they saw something on Norah's EEG someone would call, but past experiences and working in healthcare I know that doesn't always happen.

We have requested all of Norah's medical records from the last series of visits to add to our collection and we will go on from there. Norah is back to vomiting about every 2 weeks, and we continue to watch for any other signs. This is where I wish I had x-ray vision, so I would be able to see what is going in her fancy little head when these episodes come.

Norah on one of her off days, she'll be crawling somewhere then just stop and lay down for awhile.


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