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.
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.
