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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.

Friday, November 5, 2010

Why is Norah so happy?

Norah saw her neurologist on Tuesday. We were able to finally get some insight into her MRI that she had in September. I am still going to request her medical records so I can get more information, I guess it's the nurse in me that feels like doctors are not always sharing everything with you, I have seen that practiced by some doctors. So what do we know, her MRI points towards a hydrocephalus caused by aqueductal stenosis and a chiari malformation. This may lead to more surgeries in the future. If it begins to cause problems, the cerebellum getting pushed to far into the spinal cord, it will manifest similarly to shunt failure. We will have to talk to our neurosurgeon more about this at our next appointment but that isn't until the end of January.

Overall the neurologist thinks Norah is doing great, and from her side of things she doesn't see the need to see her again. She said we are welcome to see her again in a year  for followup, but not necessary and if any concerns were to arise she would see us promptly (I think for her that would be within two months, since our appointment usually gets bumped two or three times before we can get in). Hooray, finally an appointment were we weren't referred to another doctor and we have been turned loose.

While I am excited about this milestone, part of me worries that things will change tomorrow. This is when my fantastic husband steps in and reminds me not to dwell on the what-ifs and to enjoy what we have here-and-now.

As for more Norah news, she continues to crawl and pulls herself up. She is starting to get better at cruising, but would prefer to not bend and flex her hips and knees. I am working on find a good pair of shoes with arch supports, do know how hard that is to find in a size 3. I think may end up with some mini AFOs for just her foot and ankle in the near future. Norah still prefers a bottle over a sippy cup, but we are making progress in that daily. She was just over 18 pounds at the neurologist office, I think the pediasure is helping.  Our pediasure tip: banana flavor is our favorite, and make it super cold. Norah will take the Strawberry flavor, but shows favor to banana. Her language skills are growing. It is fun to hear her trying to say words, or at least trying to match syllables and sounds. Grant has been delay with his speech so I think they will learn some things together.

Now that we are updated, time for bed :)

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