Tuesday, August 31, 2010

Eye Eye Eye!

I haven't written much about Rachel lately...mostly because her symptoms have remained stable. She is a healthy thriving child, who has Neurofibromatosis.

The main concerns with my tiny bundle of energy has been her eyes. While she does not have an optic glioma, she does have a brain tumor, and narrowing her her optic pathways. This being a main cause for diminished vision.

Yesterday, Rachel came home with more than "normal" crossing of her left eye. I thought she was being goofy making her eyes cross, but as we walked home from school, it was apparent that Rachel had something going on.

I called her pediatrician and she was seen within the hour (wow!) This was Rachel's first visit with this Dr. So we had to first unload Rachel's complicated medical history in regards to NF. This dr wasted no time, in referring us to the Children's Hospital in Aurora where we were to be seeing the Ophthalmology department, the next day.

So, this morning, after Bailey left for school, we headed to the Orthodontist, for an assessment for braces. Keeping THIS appnt was important, and I kept watching the clock, knowing we had a very important Eye visit.

After the orthodontist, we drop Riley and Braden off at their schools and head to Aurora.

A thorough examination showed that in fact the crossing was an issue. Rachel did well with the initial exam but typically her crossing does eventually go back to normal. Not this time....this time her eye seemed to be stuck in a crossed position.

Rachel begged the doctor, "Please don't make me wear the patches, I don't like them!" But this is very likely to happen...even though the last time we went through this, it didn't seem to help much.

We got a new prescription which is for bifocals, and raced to get my kindergartner to school on time. When I got home, I was looking forward to some time to unwind and get some laundry done....then the phone rings.

We were ordered to go to the North Campus of the Children's Hospital for a sedated MRI of Rachel's orbits and optic pathways. Ugh! I go and pick Rachel up from school and we head off to the hospital.

The MRI took about 50 minutes and we waited while the sedation wore off. Again I raced to the school, just in time to pick up the kids. I didn't really even have time to think today...It was all about racing from point A to point B.

I have no idea what's going on with Rachel's eyes...but I do know we are going to find out. It helps that she is her funny, silly, ornery self. Her spirit is what keeps me going. The fire inside her makes me know that no matter what she faces, she will get through it with no problem.

We are a family who THRIVES. Things are placed before us, and we can choose to look at these things as problems, or we can choose to see them as simply things to overcome.

Thrive On!


  1. You are an amazing Mommy! What a beautiful & precious family you have...truly an inspiration. Praying for your sweet Rachel...along with the whole gang. :) My love & prayers, Jessica

  2. Hi - you have an amazing family. I myself have NF and both my daughters have NF. They both have multiple cafe au laits and auxillary freckling. My older daughter (9 1/2) has a few learning difficulties and is currently having OT for co-ordination. What caught my attention with your blog was that your daughter has bifocals. My daughter has been in bifocals for almost 6 years as she has squint eyes - but noone ever related it to NF. Just wondering now if it might be - will ask the opthalmologist at the next appt.
    Good luck with everything.
    Love Penny (New Zealand)

  3. Wat sweet dauter u have. I love your blog. I like reading and so I dont feel alone in my problem.
    Thank you