Norah's Appointment Update

I just asked Jason if he found today as exhausting as I did. He whole heartily agreed.



Monday Norah went for an upper GI xray. She had to go without eating until the xray was over which left us with a little girl begging for her pediasure. We went to a radiology clinic that was free standing from the hospital and closer to our house. I went in the back entrance, which was a bit of a mistake. As soon as we walked through the door, Norah saw all the different radiology rooms and began to hyperventilate. Between her breaths she was saying "I need a sticker." Over and over again. I think this little girl has been help down one two many times and been given stickers to soothe her in the situation. She put up fight for the xray but we were able to get her to drink enough of the barium while under the fluoroscope to get the pictures needed. The report shows some mild reflux, but no structural problems. Good news, but doesn't necessarily explain why she's coughing while eating, and why her chewing skills are poor.

Today was our second day this week where Norah had to go without anything to eat since the night before. This morning she went for a MRI of her head and spine which she had to be sedated for.  It was to check on her hydrocephalus, to see how her shunt and ventricles look, to look at the chiari malformation and to look at a possible syrinx in her spine. Norah started things off with a bang. She got a little over sedated initially, and kept desaturating (where your oxygen level drops) so about the time they bring up intubating her, she decided that was enough fun and began to cooperate. I must say this was the first time that we went and her IV was started with only one poke. Usually it take five, six or sometime eight to get her little veins to cooperate. I was thankful for the one poke. Norah also woke up quickly from her sedation, which was a nice change from our previous experiences.

We meet with a new neurosurgeon to the group of neurosurgeons that Norah sees. Initially I was leery to see yet another neurosurgeon. I feel comfortable, or as comfortable as you can get with the person that has to cut into your daughter's brain, with her neurosurgeon. So I wasn't sure about this, especially after researching a bit and finding out he had just finished his fellowship. In the end with all the symptoms and changes we had scene in Norah since her last formal visit in February it was important to be seen sooner rather than waiting a month to see her regular neurosurgeon. I also had a couple conversations with one of the PA's that work with the neurosurgeons that helped in making our decision. I thought this neurosurgeon was personable. He spent time talking to us. We reviewed Norah's MRI together and he pointed out different things. We discussed her slit ventricles and what that meant for Norah, giving us more understanding. Conversation was had about her Chiari malformation, it was a what came first conversation, the chicken or the egg? Or in this case, the chiari or the hydrocephalus? This lead to discussion about Norah symptoms and how they fit into all of this. Wheww! All this while Norah kept wanting to climb up on the chair and exam table, and Mason had began to wake up wanting to eat.

So what now, you might be wondering? Norah's chiari is bigger. He thinks that the pressure in Norah's head may be higher that we can see because of her slit ventricles. That because she has slit ventricles they do not always expand back open when pressure is high, making it had to see a shunt failure or anything else happening. So on Friday, Norah will once again be without anything to eat to have yet another test. This one is called a Shunt-o-gram. I feel like it should come with a post card or some silly greeting with it. They check the flow of her shunt to see where things are going and how long it take for the CSF to move around and where it goes. Then we'll talk again with the neurosurgeon. There is a high possibility that when Norah is having surgery on Monday to repair her hernias she will have a programmable shunt placed. OH did I mention on Monday Norah will be having surgery to repair an inguinal hernia and a small umbilical hernia, she is. This sweet and precious little girl of ours sure is keeping us busy lately. That's all for now, sorry for the grammatical errors, I'm exashausted. Time for bed, tomorrow morning we have therapy to go to.

Norah playing with the oversized pants they gave
her this morning because she was cold.