About Me

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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.

Thursday, February 21, 2013

Norah Update

Overall, Norah has been well. She brings so much joy to us everyday. Most recently she has become attached to Joey, Jason's doll from when he was a little boy. Joey goes everywhere with Norah.

We started off the new year we lots of appointments. Norah saw her eye doctor. After having surgery back in May to correct her eye from turning out all the time, we now find we have the opposite problem and Norah's eyes are now crossing. Her eyes looked really good until this fall, and we continue to see more and more crossing. The plan for now is just to keep watching and see what happens.

Norah had a MRI to check on her shunt and chiari, then we had an appointment with her neurosurgeon afterwards. Well the day of the MRI, they were 2 hours behind schedule, so Norah's MRI was just beginning when her appointment time with the neurosurgeon came. I was an unhappy Mom at this point, because Norah must be sedated for her MRI it meant she had nothing to eat or drink since 7pm the night before when she went to bed, and it was now 1130am the next morning. This left Norah cranky from hunger and dehydration, making starting an IV a little bit more difficult. Norah liked the medications to sedate her, requiring a bit of oxygen and taking her time waking up. At one point the nurse doing her recovery just picked her up hoping that would wake her up, she just kept on snoring away. I told the nurse when Norah's out, she's out. She won't wake up until she's ready. About an hour later she was up and ready to go.

We went right to the neurosurgeon's office, now several hours after our original appointment time. Norah was seen by a PA that works with our neurosurgeon since he was no longer in the office seeing patients. Norah's most difficult problems right now is balance and after being potty trained in August, she has regressed. She is having difficulty recognizing when she has to go to the bathroom. The PA showed me Norah's MRI. Really nothing had changed. Norah still has slit ventricles, leaving just enough room for her shunt catheter. Her chiari remains.

Norah's balance, eye problems, bathroom issues, headaches and being underweight can all be attributed to her chiari.While none of these symptoms are severe by itself, all together they affect Norah's quality of life. The PA said that they don't feel that Norah's symptoms are severe enough to consider decompression surgery at this time. They would prefer to see more regression before considering surgery. While I am not one to jump right on board with major brain surgery, I do think that we should be having a better conversation about when the right time would be. I struggle because I don't want to watch Norah's symptoms become more severe. And if Norah's balance, eyes, bathroom issues, eating, and headaches would be improved by surgery, why aren't we talking about it. Those are some important quality of life issues. For now we find we live day to day, taking a deep breath when days in which Norah's symptoms are exaggerated, praying for patience and that tomorrow will be better.

Norah has continue to make improvements in her gross motor skills, but it has been at a slower pace. Most recently Norah has learned to walk down stairs alternating her feet. Our insurance company feels that Norah is not making enough improvement at this point to continue paying for her therapy. So we have begun the appeals process and pray that they reconsider. Jason and I feel that Norah not receiving therapy is not an option. We have discussed with her therapy center an out of pocket rate for therapy, it leaves us needing to pay $100 a week. I pray the insurance company changes their mind.

Last, we have contacted the school district again. We would like Norah to be reevaluated for an IEP. Norah enjoys going to the preschool we enrolled her in this year but we are being to watch her struggle with some fine motor skills that should be developing at this point. We still often wonder about Norah receptive language. Since Norah has such good expressive language, and is quick to pick up on expected answers, it hard for other to see it unless they are spending more time with her.

Throw in a bad virus at the beginning of February that kept Norah out of school for a week, that rounds out everything Norah since the Christmas.


1 comment:

Tlholo said...

Hello, I'm so glad I could find this page. Simply because in JHB wedo not have such associations, and it is very sad that a lot of people do not even know about this condition if I may call it that.

Iam a young mother with a child with Hydro, im struggling to find the right school for him. I honestly don't know what to do next.

If anyone knows any good schools in JHB please help.