Ophthalmology

LaduBug had her ophthalmology exam with Dr. Hoffman and a repeat VEP Test  with Dr. Creel yesterday And lately, it seems like every time we visit with Dr. Hoffman we get some more bad news… I think he hates giving it to us as much as we hate getting it. 

Good News… Rylie’s tumor has not grown in the last month! So that’s a win! More good news... Rylie has become a little pro with all of this testing she has to go through. We have seen Dr. Creel 3 times for this type of test and each time he tells us how amazing she is. He said most kids her age (or older) scream and cry through the entire test. Maybe it's because she knows there is a treasure box at the end of the appointment, or maybe it's because she knows it could be worse but she just sits and takes everything in strides and gives herself a big round of applause as soon as the tests are over! :) 

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Bad news… the tumor did grow in April (We have not seen Dr. Hoffman since her last VEP Test and MRI confirmed the growth before the start of chemo) and as a result Dr. Hoffman confirmed Rylie has little to no vision in her left eye. The hope is after 12 months of chemotherapy they will be able to shrink and get rid of the tumor and "hopefully" Rylie’s vision will return. As he said the word "Hopefully" my heart sank. I think sometimes as a parent you hear what you want and need to hear and sometimes you hear the hard core truth and it smacks you right in the face. We have known for months Rylie's vision has been affected but it's hard to know just how much her vision has been affected because Rylie is so little. She can not read so that limits the tests that can do without being totally invasive... With a 2 year old the doctors pick and choose their battles and if we don't need to torture her they don't! We knew her vision was suffering, what we didn't know or I guess completely understand is that it may never return to 100%. Today Dr. Hoffman wanted to warn us that as this point we do not know how much if any of her vision will ever return. That was a little bit of a hit for us... the entire point of doing chemotherapy and putting Rylie through a year of complete torture is to get her vision back and to know there is a chance it will not return was defiantly a huge punch to the gut. It may be completely insane but as her parents I think we both thought we would go through this process and everything would return back to normal and to know there is a chance nothing will ever be normal again just... well, it sucks!!! We are still trying to wrap our heads around the fact that we have a child going through chemotherapy and are working to make some huge adjustments there and to now have to adjust to the fact she may never see out of her left eye again is terrifying. Many of you know my grandmother is blind and I have watched her suffer through that for years to think that my baby will have those same struggles breaks my heart. 

it takes a little time to adjust to that kind of news but we will adjust and we will move forward with the hope that the doctor's are doing everything they can to get rid of this tumor and get Rylie her vision back... and if they don't we will adjust to that to. Each day we gain a little bit more strength and a little bit more understanding... we will climb this mountain and hopefully some day look back on it and see just how far we have come. Rylie is a fighter and were ready to fight right along side of her. 

"Where there is no struggle, There is no Strength"