One Step Forward, One Step Back.

Having a “sick” child is one of the most exhausting things we have ever been through. I don’t think we’ve had a moments rest since we found out about the tumor in February. Sure we sleep, but we toss and turn and worry about what may happen. It has been a constant roller coaster of ups and downs.  We feel like we take one step forward and then another step back. We have had some pretty great days and some bad days and this week we had another bad day.

Rylie has been blessed with some pretty amazing teachers watching over here every day while daddy and I go to work and this week they were so sweet to make us aware of a situation we had been missing. We rely on those guys so much… Rylie spends every day with them and just a few hours a night with us so knowing they are looking out for her is literally the biggest relief a parent could ever feel. Anyway, they have noticed lately that when Rylie focuses on an object her eye starts to drift outward, almost looking like she has lazy eye. Once we were able to talk with them and get a good grip on what has been happening we decided it would probably be best to call our Tumor Coordinator up at Primary Children’s.

Rylie’s tumor, an Optic Pathway Glioma, are typically slow growing tumors so they do not want to send Rylie in for another MRI because it has only been about 6 weeks since her last MRI and they will not be able to notice much growth. Even if there has been some growth it will be hard to tell on an MRI this early in the game, they have found 3 months is typically a good time frame to get the information they need so we are going to keep her MRI scheduled for the first part of June. However, what they do want to do it have her seen by her ophthalmologist again. Her ophthalmologist will be able to get a good look at her optic nerve and will be able to see if there are any changes in the appearance of the nerve. Her team of doctors has explained to us that she will always see her ophthalmologist before her MRI because an MRI may not always pick up on the tumor’s growth but her ophthalmologist will be able to get a close look at the nerve and will be able to see any change in the appearance of the nerve. Seeing the ophthalmologist will hopefully give us some answers as to why her eye is suddenly turning outward. We currently have an appointment scheduled for Fri. Apr. 11 up at Primary Children’s.

On a positive note… we are now a binki free household! That’s right Rylie gave up he beloved binki. We started last Wednesday and as of this morning we have gone an entire week with NO binki’s and no meltdowns… SUCCESS!!!