Tori had her eyes dilated this morning for her ophthalmology appointment this morning. She did not enjoy that. 😄
The anatomy of her eyes looks great – no indicators of any neurological diseases…yet. However, the doctor said that based on the MRI she wouldn’t be surprised if her vision has deteriorated.
The doctor said that if she ends up having Krabbe’s Disease, she will likely go blind. So that is another thing to pray against.
She then had a swallow study at 11:30am, and she didn’t like them putting her in the high chair to try to feed her there. I told them it wouldn’t work 😉
We waited for a few hours for the results…and they aren’t what we wanted to hear.
Tori is aspirating when she swallows, meaning that it is going into her lungs. She also has no gag reflex. This means that she will have to be fed by an NG tube for now and possibly have to have a tube inserted into her stomach eventually. They did not seem optimistic that this would ever be healed because these muscles are controlled by her cranial nerves, and those are obviously not working.
To say today has been tough is an understatement. I will never get to breastfeed her again. She will likely never eat through her mouth. It seems like each day we find out that something is wrong with our previously healthy baby girl, and we are devastated.
Please continue to pray for a miracle.